research networks and existing cohorts
TRANSCRIPT
Research networks and existing cohorts
David C WheelerUniversity College London
dwheeleruclacuk
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
NIHR Integrated Health-Research System
bull The CRN is the research delivery arm of the NHS
bull 15 Local Clinical Research Networks (LCRNs)
bull Each CRN hosted by an NHS provider
bull Research-active engaged clinicians across all 31 therapy areas
bull Detailed understanding of care pathways
bull Allows flexible deployment of resources
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
bull Hosted and supported by the Renal Association Kidney Research UK and the British Renal Society
bull The role of lsquoChairrsquo rotates biennially between the Chair of Kidney Research UK the Academic Vice President of the Renal Association and the Vice President (Research) of the British Renal Society (currently Professor Jeremy Hughes (Chair of Trustees Kidney Research UK)
bull The overall mandate is to facilitate the best collaborative clinical research for health in kidney disease
bull Meetings of the UKKRC are held twice a year in conjunction with the meeting of the NIHR Clinical Research Network Renal Disorders Specialty Group
httpswwwkidneyresearchukorgresearchukkrc
The UK Kidney Research Consortium
The UK Kidney Research Consortium
Clinical Study Groups 1 Acute Kidney Injury Andy Lewington (Leeds) Nick Selby (Nottingham)
2 Anaemia Sunil Bhandari (Hull)
3 Cardio-Renal Patrick Mark (Glasgow)
4 Chronic Kidney DiseaseBiomarkers Maarten Taal (Derby) Nigel Brunskill (Leicester)
5 AD polycystic kidney disease Tess Harris (London) Albert Ong (Sheffield)
6 Lifestyle and Exercise Sharleen Greenwood (KCL) James Burton (Leicester)
7 GlomerulonephritisVasculitisLupus Liz Lightstone (Imperial) Rachel Jones (Cambridge)
8 Haemodialysis Sandip Mitra (Manchester)
9 CKD Mineral Bone Disorder Alistair Hutchison (Dorset) Indy Dasgupta (Brsquoham)
10 Paediatric Nephrology Sally Johnson (Newcastle)
11 Peritoneal Dialysis Mark Lambie (Stoke)
12 Transplantation Sian Griffin (Cardiff)
Strategy document
ldquoThis strategy details a number of aims with associated recommendations which are intended to unite the whole kidney (renal) professional and patient community and to provide information and evidence for funders policymakers and those helping to create and support the next generation of researchersrdquo
Published 14th April 2016
UK Renal Imaging Network Resource Enablers
bull Cliniciansbull MR Physiciansbull Radiologistbull Computer Sciencesbull MR vendorsbull Bioengineersbull Biostatistics
ldquoAccelerating new
technologies and
realising the potential
of renal MRIrdquo
Chairs Nicholas Selby Susan Francis (Nottingham)
httpsrenalorginterest-groups-partnersuk-renal-trials-network
The UKRTN offers support to researchers by encouraging the proposal and development of research ideas The UKRTN will
bull Encourage submission of trial proposals for discussion by UKRTN early in their developmentbull Provide opportunity for proposers to attend round table discussion with the UKRTNbull Provide guidance and advice and where necessary design input for trial protocolsbull Provide peer reviewbull Provide research design advice notably for applications arising outside England bull Provide endorsement of trial proposals to support funding applications
UK Renal Trials NetworkChair Thomas Hiemstra (Cambridge)
Chapter titlehellip
httpsrarerenalorgrare-disease-groups
The National Registry for Rare Kidney Disease
httpcardiorenalforumcom
The Cardiorenal Forum (CRF) is an independent group formed in 2006 The key objective of the group is to highlight the important clinical overlap that exists between patients presenting with a primary cardiovascular or renal problem Our annual scientific meeting is our most important event to bring together all involved in the management of such patients to share ideas and learn more about how to deliver high quality care
Cohort studies
UK Cohorts an overview
22 million people in the UK or 35 of the population are
participating in a cohort study
Across the UK there are ~34 large cohort population studies currently
ongoing
SH
Registered charity no 252892 Scottish charity no SC039245
bull 3000 Participants to be recruited from Nephrology Clinics at 15
sites in the United Kingdom
bull CKD stages G1-G4 and A1-A3 (A3 only for G1 and G2)
bull Serum plasma whole blood urine DNA
bull Repeat assessment and biosample collection at 12 months
bull 15 will have had recent kidney biopsy
bull Central database modelled on RADAR MT
The Renal Risk in Derby Study
July 2008 to March 2010
bull 32 practices
bull 1822 people assessed
bull 1741 people included
Year 1 follow-up
bull 2009-2011
bull 1621 people reassessed
Year 5 follow-up
bull 2013-2015
bull 1064 people reassessed
Year 10 follow-up
bull 2018-2020
bull eGFR UACR outcomesMT
PI Maarten Taal
Salford Kidney Study
bull 3250 non-dialysis CKD patients recruited from 2002-present
bull 20 diabetic nephropathy 20 hypertensionARVD 17 chronic glomerulonephritis 7 ADPKD
bull Mean eGFR 34 mlmin mean age 68 yrs
bull Average follow-up 4 years
bull Many events approx 1200 mortality 800 RRT 350 CVE
PI Phil Kalra
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
PC looser networks HF PHT cardiac surgery
AIMS includehellip ldquoto enhance UK cardiovascular clinical research capacity and capabilityrdquo
httpwwwbcscompagesnews_fullaspNewsID=19792797
Diabetes UK Clinical Study Groups
Key Cohorts Relevant to Diabetes
UK Biobank
English Longitudinal Study of Ageing (ELSA)
Whitehall II
The Million Women Study
Avon Longitudinal Study of Parents and Children (ALSPAC)
Clinical Practice Research Datalink
UK Prospective Diabetes Study
SH
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
NIHR Integrated Health-Research System
bull The CRN is the research delivery arm of the NHS
bull 15 Local Clinical Research Networks (LCRNs)
bull Each CRN hosted by an NHS provider
bull Research-active engaged clinicians across all 31 therapy areas
bull Detailed understanding of care pathways
bull Allows flexible deployment of resources
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
bull Hosted and supported by the Renal Association Kidney Research UK and the British Renal Society
bull The role of lsquoChairrsquo rotates biennially between the Chair of Kidney Research UK the Academic Vice President of the Renal Association and the Vice President (Research) of the British Renal Society (currently Professor Jeremy Hughes (Chair of Trustees Kidney Research UK)
bull The overall mandate is to facilitate the best collaborative clinical research for health in kidney disease
bull Meetings of the UKKRC are held twice a year in conjunction with the meeting of the NIHR Clinical Research Network Renal Disorders Specialty Group
httpswwwkidneyresearchukorgresearchukkrc
The UK Kidney Research Consortium
The UK Kidney Research Consortium
Clinical Study Groups 1 Acute Kidney Injury Andy Lewington (Leeds) Nick Selby (Nottingham)
2 Anaemia Sunil Bhandari (Hull)
3 Cardio-Renal Patrick Mark (Glasgow)
4 Chronic Kidney DiseaseBiomarkers Maarten Taal (Derby) Nigel Brunskill (Leicester)
5 AD polycystic kidney disease Tess Harris (London) Albert Ong (Sheffield)
6 Lifestyle and Exercise Sharleen Greenwood (KCL) James Burton (Leicester)
7 GlomerulonephritisVasculitisLupus Liz Lightstone (Imperial) Rachel Jones (Cambridge)
8 Haemodialysis Sandip Mitra (Manchester)
9 CKD Mineral Bone Disorder Alistair Hutchison (Dorset) Indy Dasgupta (Brsquoham)
10 Paediatric Nephrology Sally Johnson (Newcastle)
11 Peritoneal Dialysis Mark Lambie (Stoke)
12 Transplantation Sian Griffin (Cardiff)
Strategy document
ldquoThis strategy details a number of aims with associated recommendations which are intended to unite the whole kidney (renal) professional and patient community and to provide information and evidence for funders policymakers and those helping to create and support the next generation of researchersrdquo
Published 14th April 2016
UK Renal Imaging Network Resource Enablers
bull Cliniciansbull MR Physiciansbull Radiologistbull Computer Sciencesbull MR vendorsbull Bioengineersbull Biostatistics
ldquoAccelerating new
technologies and
realising the potential
of renal MRIrdquo
Chairs Nicholas Selby Susan Francis (Nottingham)
httpsrenalorginterest-groups-partnersuk-renal-trials-network
The UKRTN offers support to researchers by encouraging the proposal and development of research ideas The UKRTN will
bull Encourage submission of trial proposals for discussion by UKRTN early in their developmentbull Provide opportunity for proposers to attend round table discussion with the UKRTNbull Provide guidance and advice and where necessary design input for trial protocolsbull Provide peer reviewbull Provide research design advice notably for applications arising outside England bull Provide endorsement of trial proposals to support funding applications
UK Renal Trials NetworkChair Thomas Hiemstra (Cambridge)
Chapter titlehellip
httpsrarerenalorgrare-disease-groups
The National Registry for Rare Kidney Disease
httpcardiorenalforumcom
The Cardiorenal Forum (CRF) is an independent group formed in 2006 The key objective of the group is to highlight the important clinical overlap that exists between patients presenting with a primary cardiovascular or renal problem Our annual scientific meeting is our most important event to bring together all involved in the management of such patients to share ideas and learn more about how to deliver high quality care
Cohort studies
UK Cohorts an overview
22 million people in the UK or 35 of the population are
participating in a cohort study
Across the UK there are ~34 large cohort population studies currently
ongoing
SH
Registered charity no 252892 Scottish charity no SC039245
bull 3000 Participants to be recruited from Nephrology Clinics at 15
sites in the United Kingdom
bull CKD stages G1-G4 and A1-A3 (A3 only for G1 and G2)
bull Serum plasma whole blood urine DNA
bull Repeat assessment and biosample collection at 12 months
bull 15 will have had recent kidney biopsy
bull Central database modelled on RADAR MT
The Renal Risk in Derby Study
July 2008 to March 2010
bull 32 practices
bull 1822 people assessed
bull 1741 people included
Year 1 follow-up
bull 2009-2011
bull 1621 people reassessed
Year 5 follow-up
bull 2013-2015
bull 1064 people reassessed
Year 10 follow-up
bull 2018-2020
bull eGFR UACR outcomesMT
PI Maarten Taal
Salford Kidney Study
bull 3250 non-dialysis CKD patients recruited from 2002-present
bull 20 diabetic nephropathy 20 hypertensionARVD 17 chronic glomerulonephritis 7 ADPKD
bull Mean eGFR 34 mlmin mean age 68 yrs
bull Average follow-up 4 years
bull Many events approx 1200 mortality 800 RRT 350 CVE
PI Phil Kalra
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
PC looser networks HF PHT cardiac surgery
AIMS includehellip ldquoto enhance UK cardiovascular clinical research capacity and capabilityrdquo
httpwwwbcscompagesnews_fullaspNewsID=19792797
Diabetes UK Clinical Study Groups
Key Cohorts Relevant to Diabetes
UK Biobank
English Longitudinal Study of Ageing (ELSA)
Whitehall II
The Million Women Study
Avon Longitudinal Study of Parents and Children (ALSPAC)
Clinical Practice Research Datalink
UK Prospective Diabetes Study
SH
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
NIHR Integrated Health-Research System
bull The CRN is the research delivery arm of the NHS
bull 15 Local Clinical Research Networks (LCRNs)
bull Each CRN hosted by an NHS provider
bull Research-active engaged clinicians across all 31 therapy areas
bull Detailed understanding of care pathways
bull Allows flexible deployment of resources
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
bull Hosted and supported by the Renal Association Kidney Research UK and the British Renal Society
bull The role of lsquoChairrsquo rotates biennially between the Chair of Kidney Research UK the Academic Vice President of the Renal Association and the Vice President (Research) of the British Renal Society (currently Professor Jeremy Hughes (Chair of Trustees Kidney Research UK)
bull The overall mandate is to facilitate the best collaborative clinical research for health in kidney disease
bull Meetings of the UKKRC are held twice a year in conjunction with the meeting of the NIHR Clinical Research Network Renal Disorders Specialty Group
httpswwwkidneyresearchukorgresearchukkrc
The UK Kidney Research Consortium
The UK Kidney Research Consortium
Clinical Study Groups 1 Acute Kidney Injury Andy Lewington (Leeds) Nick Selby (Nottingham)
2 Anaemia Sunil Bhandari (Hull)
3 Cardio-Renal Patrick Mark (Glasgow)
4 Chronic Kidney DiseaseBiomarkers Maarten Taal (Derby) Nigel Brunskill (Leicester)
5 AD polycystic kidney disease Tess Harris (London) Albert Ong (Sheffield)
6 Lifestyle and Exercise Sharleen Greenwood (KCL) James Burton (Leicester)
7 GlomerulonephritisVasculitisLupus Liz Lightstone (Imperial) Rachel Jones (Cambridge)
8 Haemodialysis Sandip Mitra (Manchester)
9 CKD Mineral Bone Disorder Alistair Hutchison (Dorset) Indy Dasgupta (Brsquoham)
10 Paediatric Nephrology Sally Johnson (Newcastle)
11 Peritoneal Dialysis Mark Lambie (Stoke)
12 Transplantation Sian Griffin (Cardiff)
Strategy document
ldquoThis strategy details a number of aims with associated recommendations which are intended to unite the whole kidney (renal) professional and patient community and to provide information and evidence for funders policymakers and those helping to create and support the next generation of researchersrdquo
Published 14th April 2016
UK Renal Imaging Network Resource Enablers
bull Cliniciansbull MR Physiciansbull Radiologistbull Computer Sciencesbull MR vendorsbull Bioengineersbull Biostatistics
ldquoAccelerating new
technologies and
realising the potential
of renal MRIrdquo
Chairs Nicholas Selby Susan Francis (Nottingham)
httpsrenalorginterest-groups-partnersuk-renal-trials-network
The UKRTN offers support to researchers by encouraging the proposal and development of research ideas The UKRTN will
bull Encourage submission of trial proposals for discussion by UKRTN early in their developmentbull Provide opportunity for proposers to attend round table discussion with the UKRTNbull Provide guidance and advice and where necessary design input for trial protocolsbull Provide peer reviewbull Provide research design advice notably for applications arising outside England bull Provide endorsement of trial proposals to support funding applications
UK Renal Trials NetworkChair Thomas Hiemstra (Cambridge)
Chapter titlehellip
httpsrarerenalorgrare-disease-groups
The National Registry for Rare Kidney Disease
httpcardiorenalforumcom
The Cardiorenal Forum (CRF) is an independent group formed in 2006 The key objective of the group is to highlight the important clinical overlap that exists between patients presenting with a primary cardiovascular or renal problem Our annual scientific meeting is our most important event to bring together all involved in the management of such patients to share ideas and learn more about how to deliver high quality care
Cohort studies
UK Cohorts an overview
22 million people in the UK or 35 of the population are
participating in a cohort study
Across the UK there are ~34 large cohort population studies currently
ongoing
SH
Registered charity no 252892 Scottish charity no SC039245
bull 3000 Participants to be recruited from Nephrology Clinics at 15
sites in the United Kingdom
bull CKD stages G1-G4 and A1-A3 (A3 only for G1 and G2)
bull Serum plasma whole blood urine DNA
bull Repeat assessment and biosample collection at 12 months
bull 15 will have had recent kidney biopsy
bull Central database modelled on RADAR MT
The Renal Risk in Derby Study
July 2008 to March 2010
bull 32 practices
bull 1822 people assessed
bull 1741 people included
Year 1 follow-up
bull 2009-2011
bull 1621 people reassessed
Year 5 follow-up
bull 2013-2015
bull 1064 people reassessed
Year 10 follow-up
bull 2018-2020
bull eGFR UACR outcomesMT
PI Maarten Taal
Salford Kidney Study
bull 3250 non-dialysis CKD patients recruited from 2002-present
bull 20 diabetic nephropathy 20 hypertensionARVD 17 chronic glomerulonephritis 7 ADPKD
bull Mean eGFR 34 mlmin mean age 68 yrs
bull Average follow-up 4 years
bull Many events approx 1200 mortality 800 RRT 350 CVE
PI Phil Kalra
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
PC looser networks HF PHT cardiac surgery
AIMS includehellip ldquoto enhance UK cardiovascular clinical research capacity and capabilityrdquo
httpwwwbcscompagesnews_fullaspNewsID=19792797
Diabetes UK Clinical Study Groups
Key Cohorts Relevant to Diabetes
UK Biobank
English Longitudinal Study of Ageing (ELSA)
Whitehall II
The Million Women Study
Avon Longitudinal Study of Parents and Children (ALSPAC)
Clinical Practice Research Datalink
UK Prospective Diabetes Study
SH
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
bull Hosted and supported by the Renal Association Kidney Research UK and the British Renal Society
bull The role of lsquoChairrsquo rotates biennially between the Chair of Kidney Research UK the Academic Vice President of the Renal Association and the Vice President (Research) of the British Renal Society (currently Professor Jeremy Hughes (Chair of Trustees Kidney Research UK)
bull The overall mandate is to facilitate the best collaborative clinical research for health in kidney disease
bull Meetings of the UKKRC are held twice a year in conjunction with the meeting of the NIHR Clinical Research Network Renal Disorders Specialty Group
httpswwwkidneyresearchukorgresearchukkrc
The UK Kidney Research Consortium
The UK Kidney Research Consortium
Clinical Study Groups 1 Acute Kidney Injury Andy Lewington (Leeds) Nick Selby (Nottingham)
2 Anaemia Sunil Bhandari (Hull)
3 Cardio-Renal Patrick Mark (Glasgow)
4 Chronic Kidney DiseaseBiomarkers Maarten Taal (Derby) Nigel Brunskill (Leicester)
5 AD polycystic kidney disease Tess Harris (London) Albert Ong (Sheffield)
6 Lifestyle and Exercise Sharleen Greenwood (KCL) James Burton (Leicester)
7 GlomerulonephritisVasculitisLupus Liz Lightstone (Imperial) Rachel Jones (Cambridge)
8 Haemodialysis Sandip Mitra (Manchester)
9 CKD Mineral Bone Disorder Alistair Hutchison (Dorset) Indy Dasgupta (Brsquoham)
10 Paediatric Nephrology Sally Johnson (Newcastle)
11 Peritoneal Dialysis Mark Lambie (Stoke)
12 Transplantation Sian Griffin (Cardiff)
Strategy document
ldquoThis strategy details a number of aims with associated recommendations which are intended to unite the whole kidney (renal) professional and patient community and to provide information and evidence for funders policymakers and those helping to create and support the next generation of researchersrdquo
Published 14th April 2016
UK Renal Imaging Network Resource Enablers
bull Cliniciansbull MR Physiciansbull Radiologistbull Computer Sciencesbull MR vendorsbull Bioengineersbull Biostatistics
ldquoAccelerating new
technologies and
realising the potential
of renal MRIrdquo
Chairs Nicholas Selby Susan Francis (Nottingham)
httpsrenalorginterest-groups-partnersuk-renal-trials-network
The UKRTN offers support to researchers by encouraging the proposal and development of research ideas The UKRTN will
bull Encourage submission of trial proposals for discussion by UKRTN early in their developmentbull Provide opportunity for proposers to attend round table discussion with the UKRTNbull Provide guidance and advice and where necessary design input for trial protocolsbull Provide peer reviewbull Provide research design advice notably for applications arising outside England bull Provide endorsement of trial proposals to support funding applications
UK Renal Trials NetworkChair Thomas Hiemstra (Cambridge)
Chapter titlehellip
httpsrarerenalorgrare-disease-groups
The National Registry for Rare Kidney Disease
httpcardiorenalforumcom
The Cardiorenal Forum (CRF) is an independent group formed in 2006 The key objective of the group is to highlight the important clinical overlap that exists between patients presenting with a primary cardiovascular or renal problem Our annual scientific meeting is our most important event to bring together all involved in the management of such patients to share ideas and learn more about how to deliver high quality care
Cohort studies
UK Cohorts an overview
22 million people in the UK or 35 of the population are
participating in a cohort study
Across the UK there are ~34 large cohort population studies currently
ongoing
SH
Registered charity no 252892 Scottish charity no SC039245
bull 3000 Participants to be recruited from Nephrology Clinics at 15
sites in the United Kingdom
bull CKD stages G1-G4 and A1-A3 (A3 only for G1 and G2)
bull Serum plasma whole blood urine DNA
bull Repeat assessment and biosample collection at 12 months
bull 15 will have had recent kidney biopsy
bull Central database modelled on RADAR MT
The Renal Risk in Derby Study
July 2008 to March 2010
bull 32 practices
bull 1822 people assessed
bull 1741 people included
Year 1 follow-up
bull 2009-2011
bull 1621 people reassessed
Year 5 follow-up
bull 2013-2015
bull 1064 people reassessed
Year 10 follow-up
bull 2018-2020
bull eGFR UACR outcomesMT
PI Maarten Taal
Salford Kidney Study
bull 3250 non-dialysis CKD patients recruited from 2002-present
bull 20 diabetic nephropathy 20 hypertensionARVD 17 chronic glomerulonephritis 7 ADPKD
bull Mean eGFR 34 mlmin mean age 68 yrs
bull Average follow-up 4 years
bull Many events approx 1200 mortality 800 RRT 350 CVE
PI Phil Kalra
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
PC looser networks HF PHT cardiac surgery
AIMS includehellip ldquoto enhance UK cardiovascular clinical research capacity and capabilityrdquo
httpwwwbcscompagesnews_fullaspNewsID=19792797
Diabetes UK Clinical Study Groups
Key Cohorts Relevant to Diabetes
UK Biobank
English Longitudinal Study of Ageing (ELSA)
Whitehall II
The Million Women Study
Avon Longitudinal Study of Parents and Children (ALSPAC)
Clinical Practice Research Datalink
UK Prospective Diabetes Study
SH
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
bull Hosted and supported by the Renal Association Kidney Research UK and the British Renal Society
bull The role of lsquoChairrsquo rotates biennially between the Chair of Kidney Research UK the Academic Vice President of the Renal Association and the Vice President (Research) of the British Renal Society (currently Professor Jeremy Hughes (Chair of Trustees Kidney Research UK)
bull The overall mandate is to facilitate the best collaborative clinical research for health in kidney disease
bull Meetings of the UKKRC are held twice a year in conjunction with the meeting of the NIHR Clinical Research Network Renal Disorders Specialty Group
httpswwwkidneyresearchukorgresearchukkrc
The UK Kidney Research Consortium
The UK Kidney Research Consortium
Clinical Study Groups 1 Acute Kidney Injury Andy Lewington (Leeds) Nick Selby (Nottingham)
2 Anaemia Sunil Bhandari (Hull)
3 Cardio-Renal Patrick Mark (Glasgow)
4 Chronic Kidney DiseaseBiomarkers Maarten Taal (Derby) Nigel Brunskill (Leicester)
5 AD polycystic kidney disease Tess Harris (London) Albert Ong (Sheffield)
6 Lifestyle and Exercise Sharleen Greenwood (KCL) James Burton (Leicester)
7 GlomerulonephritisVasculitisLupus Liz Lightstone (Imperial) Rachel Jones (Cambridge)
8 Haemodialysis Sandip Mitra (Manchester)
9 CKD Mineral Bone Disorder Alistair Hutchison (Dorset) Indy Dasgupta (Brsquoham)
10 Paediatric Nephrology Sally Johnson (Newcastle)
11 Peritoneal Dialysis Mark Lambie (Stoke)
12 Transplantation Sian Griffin (Cardiff)
Strategy document
ldquoThis strategy details a number of aims with associated recommendations which are intended to unite the whole kidney (renal) professional and patient community and to provide information and evidence for funders policymakers and those helping to create and support the next generation of researchersrdquo
Published 14th April 2016
UK Renal Imaging Network Resource Enablers
bull Cliniciansbull MR Physiciansbull Radiologistbull Computer Sciencesbull MR vendorsbull Bioengineersbull Biostatistics
ldquoAccelerating new
technologies and
realising the potential
of renal MRIrdquo
Chairs Nicholas Selby Susan Francis (Nottingham)
httpsrenalorginterest-groups-partnersuk-renal-trials-network
The UKRTN offers support to researchers by encouraging the proposal and development of research ideas The UKRTN will
bull Encourage submission of trial proposals for discussion by UKRTN early in their developmentbull Provide opportunity for proposers to attend round table discussion with the UKRTNbull Provide guidance and advice and where necessary design input for trial protocolsbull Provide peer reviewbull Provide research design advice notably for applications arising outside England bull Provide endorsement of trial proposals to support funding applications
UK Renal Trials NetworkChair Thomas Hiemstra (Cambridge)
Chapter titlehellip
httpsrarerenalorgrare-disease-groups
The National Registry for Rare Kidney Disease
httpcardiorenalforumcom
The Cardiorenal Forum (CRF) is an independent group formed in 2006 The key objective of the group is to highlight the important clinical overlap that exists between patients presenting with a primary cardiovascular or renal problem Our annual scientific meeting is our most important event to bring together all involved in the management of such patients to share ideas and learn more about how to deliver high quality care
Cohort studies
UK Cohorts an overview
22 million people in the UK or 35 of the population are
participating in a cohort study
Across the UK there are ~34 large cohort population studies currently
ongoing
SH
Registered charity no 252892 Scottish charity no SC039245
bull 3000 Participants to be recruited from Nephrology Clinics at 15
sites in the United Kingdom
bull CKD stages G1-G4 and A1-A3 (A3 only for G1 and G2)
bull Serum plasma whole blood urine DNA
bull Repeat assessment and biosample collection at 12 months
bull 15 will have had recent kidney biopsy
bull Central database modelled on RADAR MT
The Renal Risk in Derby Study
July 2008 to March 2010
bull 32 practices
bull 1822 people assessed
bull 1741 people included
Year 1 follow-up
bull 2009-2011
bull 1621 people reassessed
Year 5 follow-up
bull 2013-2015
bull 1064 people reassessed
Year 10 follow-up
bull 2018-2020
bull eGFR UACR outcomesMT
PI Maarten Taal
Salford Kidney Study
bull 3250 non-dialysis CKD patients recruited from 2002-present
bull 20 diabetic nephropathy 20 hypertensionARVD 17 chronic glomerulonephritis 7 ADPKD
bull Mean eGFR 34 mlmin mean age 68 yrs
bull Average follow-up 4 years
bull Many events approx 1200 mortality 800 RRT 350 CVE
PI Phil Kalra
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
PC looser networks HF PHT cardiac surgery
AIMS includehellip ldquoto enhance UK cardiovascular clinical research capacity and capabilityrdquo
httpwwwbcscompagesnews_fullaspNewsID=19792797
Diabetes UK Clinical Study Groups
Key Cohorts Relevant to Diabetes
UK Biobank
English Longitudinal Study of Ageing (ELSA)
Whitehall II
The Million Women Study
Avon Longitudinal Study of Parents and Children (ALSPAC)
Clinical Practice Research Datalink
UK Prospective Diabetes Study
SH
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
The UK Kidney Research Consortium
Clinical Study Groups 1 Acute Kidney Injury Andy Lewington (Leeds) Nick Selby (Nottingham)
2 Anaemia Sunil Bhandari (Hull)
3 Cardio-Renal Patrick Mark (Glasgow)
4 Chronic Kidney DiseaseBiomarkers Maarten Taal (Derby) Nigel Brunskill (Leicester)
5 AD polycystic kidney disease Tess Harris (London) Albert Ong (Sheffield)
6 Lifestyle and Exercise Sharleen Greenwood (KCL) James Burton (Leicester)
7 GlomerulonephritisVasculitisLupus Liz Lightstone (Imperial) Rachel Jones (Cambridge)
8 Haemodialysis Sandip Mitra (Manchester)
9 CKD Mineral Bone Disorder Alistair Hutchison (Dorset) Indy Dasgupta (Brsquoham)
10 Paediatric Nephrology Sally Johnson (Newcastle)
11 Peritoneal Dialysis Mark Lambie (Stoke)
12 Transplantation Sian Griffin (Cardiff)
Strategy document
ldquoThis strategy details a number of aims with associated recommendations which are intended to unite the whole kidney (renal) professional and patient community and to provide information and evidence for funders policymakers and those helping to create and support the next generation of researchersrdquo
Published 14th April 2016
UK Renal Imaging Network Resource Enablers
bull Cliniciansbull MR Physiciansbull Radiologistbull Computer Sciencesbull MR vendorsbull Bioengineersbull Biostatistics
ldquoAccelerating new
technologies and
realising the potential
of renal MRIrdquo
Chairs Nicholas Selby Susan Francis (Nottingham)
httpsrenalorginterest-groups-partnersuk-renal-trials-network
The UKRTN offers support to researchers by encouraging the proposal and development of research ideas The UKRTN will
bull Encourage submission of trial proposals for discussion by UKRTN early in their developmentbull Provide opportunity for proposers to attend round table discussion with the UKRTNbull Provide guidance and advice and where necessary design input for trial protocolsbull Provide peer reviewbull Provide research design advice notably for applications arising outside England bull Provide endorsement of trial proposals to support funding applications
UK Renal Trials NetworkChair Thomas Hiemstra (Cambridge)
Chapter titlehellip
httpsrarerenalorgrare-disease-groups
The National Registry for Rare Kidney Disease
httpcardiorenalforumcom
The Cardiorenal Forum (CRF) is an independent group formed in 2006 The key objective of the group is to highlight the important clinical overlap that exists between patients presenting with a primary cardiovascular or renal problem Our annual scientific meeting is our most important event to bring together all involved in the management of such patients to share ideas and learn more about how to deliver high quality care
Cohort studies
UK Cohorts an overview
22 million people in the UK or 35 of the population are
participating in a cohort study
Across the UK there are ~34 large cohort population studies currently
ongoing
SH
Registered charity no 252892 Scottish charity no SC039245
bull 3000 Participants to be recruited from Nephrology Clinics at 15
sites in the United Kingdom
bull CKD stages G1-G4 and A1-A3 (A3 only for G1 and G2)
bull Serum plasma whole blood urine DNA
bull Repeat assessment and biosample collection at 12 months
bull 15 will have had recent kidney biopsy
bull Central database modelled on RADAR MT
The Renal Risk in Derby Study
July 2008 to March 2010
bull 32 practices
bull 1822 people assessed
bull 1741 people included
Year 1 follow-up
bull 2009-2011
bull 1621 people reassessed
Year 5 follow-up
bull 2013-2015
bull 1064 people reassessed
Year 10 follow-up
bull 2018-2020
bull eGFR UACR outcomesMT
PI Maarten Taal
Salford Kidney Study
bull 3250 non-dialysis CKD patients recruited from 2002-present
bull 20 diabetic nephropathy 20 hypertensionARVD 17 chronic glomerulonephritis 7 ADPKD
bull Mean eGFR 34 mlmin mean age 68 yrs
bull Average follow-up 4 years
bull Many events approx 1200 mortality 800 RRT 350 CVE
PI Phil Kalra
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
PC looser networks HF PHT cardiac surgery
AIMS includehellip ldquoto enhance UK cardiovascular clinical research capacity and capabilityrdquo
httpwwwbcscompagesnews_fullaspNewsID=19792797
Diabetes UK Clinical Study Groups
Key Cohorts Relevant to Diabetes
UK Biobank
English Longitudinal Study of Ageing (ELSA)
Whitehall II
The Million Women Study
Avon Longitudinal Study of Parents and Children (ALSPAC)
Clinical Practice Research Datalink
UK Prospective Diabetes Study
SH
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
Clinical Study Groups 1 Acute Kidney Injury Andy Lewington (Leeds) Nick Selby (Nottingham)
2 Anaemia Sunil Bhandari (Hull)
3 Cardio-Renal Patrick Mark (Glasgow)
4 Chronic Kidney DiseaseBiomarkers Maarten Taal (Derby) Nigel Brunskill (Leicester)
5 AD polycystic kidney disease Tess Harris (London) Albert Ong (Sheffield)
6 Lifestyle and Exercise Sharleen Greenwood (KCL) James Burton (Leicester)
7 GlomerulonephritisVasculitisLupus Liz Lightstone (Imperial) Rachel Jones (Cambridge)
8 Haemodialysis Sandip Mitra (Manchester)
9 CKD Mineral Bone Disorder Alistair Hutchison (Dorset) Indy Dasgupta (Brsquoham)
10 Paediatric Nephrology Sally Johnson (Newcastle)
11 Peritoneal Dialysis Mark Lambie (Stoke)
12 Transplantation Sian Griffin (Cardiff)
Strategy document
ldquoThis strategy details a number of aims with associated recommendations which are intended to unite the whole kidney (renal) professional and patient community and to provide information and evidence for funders policymakers and those helping to create and support the next generation of researchersrdquo
Published 14th April 2016
UK Renal Imaging Network Resource Enablers
bull Cliniciansbull MR Physiciansbull Radiologistbull Computer Sciencesbull MR vendorsbull Bioengineersbull Biostatistics
ldquoAccelerating new
technologies and
realising the potential
of renal MRIrdquo
Chairs Nicholas Selby Susan Francis (Nottingham)
httpsrenalorginterest-groups-partnersuk-renal-trials-network
The UKRTN offers support to researchers by encouraging the proposal and development of research ideas The UKRTN will
bull Encourage submission of trial proposals for discussion by UKRTN early in their developmentbull Provide opportunity for proposers to attend round table discussion with the UKRTNbull Provide guidance and advice and where necessary design input for trial protocolsbull Provide peer reviewbull Provide research design advice notably for applications arising outside England bull Provide endorsement of trial proposals to support funding applications
UK Renal Trials NetworkChair Thomas Hiemstra (Cambridge)
Chapter titlehellip
httpsrarerenalorgrare-disease-groups
The National Registry for Rare Kidney Disease
httpcardiorenalforumcom
The Cardiorenal Forum (CRF) is an independent group formed in 2006 The key objective of the group is to highlight the important clinical overlap that exists between patients presenting with a primary cardiovascular or renal problem Our annual scientific meeting is our most important event to bring together all involved in the management of such patients to share ideas and learn more about how to deliver high quality care
Cohort studies
UK Cohorts an overview
22 million people in the UK or 35 of the population are
participating in a cohort study
Across the UK there are ~34 large cohort population studies currently
ongoing
SH
Registered charity no 252892 Scottish charity no SC039245
bull 3000 Participants to be recruited from Nephrology Clinics at 15
sites in the United Kingdom
bull CKD stages G1-G4 and A1-A3 (A3 only for G1 and G2)
bull Serum plasma whole blood urine DNA
bull Repeat assessment and biosample collection at 12 months
bull 15 will have had recent kidney biopsy
bull Central database modelled on RADAR MT
The Renal Risk in Derby Study
July 2008 to March 2010
bull 32 practices
bull 1822 people assessed
bull 1741 people included
Year 1 follow-up
bull 2009-2011
bull 1621 people reassessed
Year 5 follow-up
bull 2013-2015
bull 1064 people reassessed
Year 10 follow-up
bull 2018-2020
bull eGFR UACR outcomesMT
PI Maarten Taal
Salford Kidney Study
bull 3250 non-dialysis CKD patients recruited from 2002-present
bull 20 diabetic nephropathy 20 hypertensionARVD 17 chronic glomerulonephritis 7 ADPKD
bull Mean eGFR 34 mlmin mean age 68 yrs
bull Average follow-up 4 years
bull Many events approx 1200 mortality 800 RRT 350 CVE
PI Phil Kalra
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
PC looser networks HF PHT cardiac surgery
AIMS includehellip ldquoto enhance UK cardiovascular clinical research capacity and capabilityrdquo
httpwwwbcscompagesnews_fullaspNewsID=19792797
Diabetes UK Clinical Study Groups
Key Cohorts Relevant to Diabetes
UK Biobank
English Longitudinal Study of Ageing (ELSA)
Whitehall II
The Million Women Study
Avon Longitudinal Study of Parents and Children (ALSPAC)
Clinical Practice Research Datalink
UK Prospective Diabetes Study
SH
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
Strategy document
ldquoThis strategy details a number of aims with associated recommendations which are intended to unite the whole kidney (renal) professional and patient community and to provide information and evidence for funders policymakers and those helping to create and support the next generation of researchersrdquo
Published 14th April 2016
UK Renal Imaging Network Resource Enablers
bull Cliniciansbull MR Physiciansbull Radiologistbull Computer Sciencesbull MR vendorsbull Bioengineersbull Biostatistics
ldquoAccelerating new
technologies and
realising the potential
of renal MRIrdquo
Chairs Nicholas Selby Susan Francis (Nottingham)
httpsrenalorginterest-groups-partnersuk-renal-trials-network
The UKRTN offers support to researchers by encouraging the proposal and development of research ideas The UKRTN will
bull Encourage submission of trial proposals for discussion by UKRTN early in their developmentbull Provide opportunity for proposers to attend round table discussion with the UKRTNbull Provide guidance and advice and where necessary design input for trial protocolsbull Provide peer reviewbull Provide research design advice notably for applications arising outside England bull Provide endorsement of trial proposals to support funding applications
UK Renal Trials NetworkChair Thomas Hiemstra (Cambridge)
Chapter titlehellip
httpsrarerenalorgrare-disease-groups
The National Registry for Rare Kidney Disease
httpcardiorenalforumcom
The Cardiorenal Forum (CRF) is an independent group formed in 2006 The key objective of the group is to highlight the important clinical overlap that exists between patients presenting with a primary cardiovascular or renal problem Our annual scientific meeting is our most important event to bring together all involved in the management of such patients to share ideas and learn more about how to deliver high quality care
Cohort studies
UK Cohorts an overview
22 million people in the UK or 35 of the population are
participating in a cohort study
Across the UK there are ~34 large cohort population studies currently
ongoing
SH
Registered charity no 252892 Scottish charity no SC039245
bull 3000 Participants to be recruited from Nephrology Clinics at 15
sites in the United Kingdom
bull CKD stages G1-G4 and A1-A3 (A3 only for G1 and G2)
bull Serum plasma whole blood urine DNA
bull Repeat assessment and biosample collection at 12 months
bull 15 will have had recent kidney biopsy
bull Central database modelled on RADAR MT
The Renal Risk in Derby Study
July 2008 to March 2010
bull 32 practices
bull 1822 people assessed
bull 1741 people included
Year 1 follow-up
bull 2009-2011
bull 1621 people reassessed
Year 5 follow-up
bull 2013-2015
bull 1064 people reassessed
Year 10 follow-up
bull 2018-2020
bull eGFR UACR outcomesMT
PI Maarten Taal
Salford Kidney Study
bull 3250 non-dialysis CKD patients recruited from 2002-present
bull 20 diabetic nephropathy 20 hypertensionARVD 17 chronic glomerulonephritis 7 ADPKD
bull Mean eGFR 34 mlmin mean age 68 yrs
bull Average follow-up 4 years
bull Many events approx 1200 mortality 800 RRT 350 CVE
PI Phil Kalra
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
PC looser networks HF PHT cardiac surgery
AIMS includehellip ldquoto enhance UK cardiovascular clinical research capacity and capabilityrdquo
httpwwwbcscompagesnews_fullaspNewsID=19792797
Diabetes UK Clinical Study Groups
Key Cohorts Relevant to Diabetes
UK Biobank
English Longitudinal Study of Ageing (ELSA)
Whitehall II
The Million Women Study
Avon Longitudinal Study of Parents and Children (ALSPAC)
Clinical Practice Research Datalink
UK Prospective Diabetes Study
SH
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
UK Renal Imaging Network Resource Enablers
bull Cliniciansbull MR Physiciansbull Radiologistbull Computer Sciencesbull MR vendorsbull Bioengineersbull Biostatistics
ldquoAccelerating new
technologies and
realising the potential
of renal MRIrdquo
Chairs Nicholas Selby Susan Francis (Nottingham)
httpsrenalorginterest-groups-partnersuk-renal-trials-network
The UKRTN offers support to researchers by encouraging the proposal and development of research ideas The UKRTN will
bull Encourage submission of trial proposals for discussion by UKRTN early in their developmentbull Provide opportunity for proposers to attend round table discussion with the UKRTNbull Provide guidance and advice and where necessary design input for trial protocolsbull Provide peer reviewbull Provide research design advice notably for applications arising outside England bull Provide endorsement of trial proposals to support funding applications
UK Renal Trials NetworkChair Thomas Hiemstra (Cambridge)
Chapter titlehellip
httpsrarerenalorgrare-disease-groups
The National Registry for Rare Kidney Disease
httpcardiorenalforumcom
The Cardiorenal Forum (CRF) is an independent group formed in 2006 The key objective of the group is to highlight the important clinical overlap that exists between patients presenting with a primary cardiovascular or renal problem Our annual scientific meeting is our most important event to bring together all involved in the management of such patients to share ideas and learn more about how to deliver high quality care
Cohort studies
UK Cohorts an overview
22 million people in the UK or 35 of the population are
participating in a cohort study
Across the UK there are ~34 large cohort population studies currently
ongoing
SH
Registered charity no 252892 Scottish charity no SC039245
bull 3000 Participants to be recruited from Nephrology Clinics at 15
sites in the United Kingdom
bull CKD stages G1-G4 and A1-A3 (A3 only for G1 and G2)
bull Serum plasma whole blood urine DNA
bull Repeat assessment and biosample collection at 12 months
bull 15 will have had recent kidney biopsy
bull Central database modelled on RADAR MT
The Renal Risk in Derby Study
July 2008 to March 2010
bull 32 practices
bull 1822 people assessed
bull 1741 people included
Year 1 follow-up
bull 2009-2011
bull 1621 people reassessed
Year 5 follow-up
bull 2013-2015
bull 1064 people reassessed
Year 10 follow-up
bull 2018-2020
bull eGFR UACR outcomesMT
PI Maarten Taal
Salford Kidney Study
bull 3250 non-dialysis CKD patients recruited from 2002-present
bull 20 diabetic nephropathy 20 hypertensionARVD 17 chronic glomerulonephritis 7 ADPKD
bull Mean eGFR 34 mlmin mean age 68 yrs
bull Average follow-up 4 years
bull Many events approx 1200 mortality 800 RRT 350 CVE
PI Phil Kalra
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
PC looser networks HF PHT cardiac surgery
AIMS includehellip ldquoto enhance UK cardiovascular clinical research capacity and capabilityrdquo
httpwwwbcscompagesnews_fullaspNewsID=19792797
Diabetes UK Clinical Study Groups
Key Cohorts Relevant to Diabetes
UK Biobank
English Longitudinal Study of Ageing (ELSA)
Whitehall II
The Million Women Study
Avon Longitudinal Study of Parents and Children (ALSPAC)
Clinical Practice Research Datalink
UK Prospective Diabetes Study
SH
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
httpsrenalorginterest-groups-partnersuk-renal-trials-network
The UKRTN offers support to researchers by encouraging the proposal and development of research ideas The UKRTN will
bull Encourage submission of trial proposals for discussion by UKRTN early in their developmentbull Provide opportunity for proposers to attend round table discussion with the UKRTNbull Provide guidance and advice and where necessary design input for trial protocolsbull Provide peer reviewbull Provide research design advice notably for applications arising outside England bull Provide endorsement of trial proposals to support funding applications
UK Renal Trials NetworkChair Thomas Hiemstra (Cambridge)
Chapter titlehellip
httpsrarerenalorgrare-disease-groups
The National Registry for Rare Kidney Disease
httpcardiorenalforumcom
The Cardiorenal Forum (CRF) is an independent group formed in 2006 The key objective of the group is to highlight the important clinical overlap that exists between patients presenting with a primary cardiovascular or renal problem Our annual scientific meeting is our most important event to bring together all involved in the management of such patients to share ideas and learn more about how to deliver high quality care
Cohort studies
UK Cohorts an overview
22 million people in the UK or 35 of the population are
participating in a cohort study
Across the UK there are ~34 large cohort population studies currently
ongoing
SH
Registered charity no 252892 Scottish charity no SC039245
bull 3000 Participants to be recruited from Nephrology Clinics at 15
sites in the United Kingdom
bull CKD stages G1-G4 and A1-A3 (A3 only for G1 and G2)
bull Serum plasma whole blood urine DNA
bull Repeat assessment and biosample collection at 12 months
bull 15 will have had recent kidney biopsy
bull Central database modelled on RADAR MT
The Renal Risk in Derby Study
July 2008 to March 2010
bull 32 practices
bull 1822 people assessed
bull 1741 people included
Year 1 follow-up
bull 2009-2011
bull 1621 people reassessed
Year 5 follow-up
bull 2013-2015
bull 1064 people reassessed
Year 10 follow-up
bull 2018-2020
bull eGFR UACR outcomesMT
PI Maarten Taal
Salford Kidney Study
bull 3250 non-dialysis CKD patients recruited from 2002-present
bull 20 diabetic nephropathy 20 hypertensionARVD 17 chronic glomerulonephritis 7 ADPKD
bull Mean eGFR 34 mlmin mean age 68 yrs
bull Average follow-up 4 years
bull Many events approx 1200 mortality 800 RRT 350 CVE
PI Phil Kalra
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
PC looser networks HF PHT cardiac surgery
AIMS includehellip ldquoto enhance UK cardiovascular clinical research capacity and capabilityrdquo
httpwwwbcscompagesnews_fullaspNewsID=19792797
Diabetes UK Clinical Study Groups
Key Cohorts Relevant to Diabetes
UK Biobank
English Longitudinal Study of Ageing (ELSA)
Whitehall II
The Million Women Study
Avon Longitudinal Study of Parents and Children (ALSPAC)
Clinical Practice Research Datalink
UK Prospective Diabetes Study
SH
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
Chapter titlehellip
httpsrarerenalorgrare-disease-groups
The National Registry for Rare Kidney Disease
httpcardiorenalforumcom
The Cardiorenal Forum (CRF) is an independent group formed in 2006 The key objective of the group is to highlight the important clinical overlap that exists between patients presenting with a primary cardiovascular or renal problem Our annual scientific meeting is our most important event to bring together all involved in the management of such patients to share ideas and learn more about how to deliver high quality care
Cohort studies
UK Cohorts an overview
22 million people in the UK or 35 of the population are
participating in a cohort study
Across the UK there are ~34 large cohort population studies currently
ongoing
SH
Registered charity no 252892 Scottish charity no SC039245
bull 3000 Participants to be recruited from Nephrology Clinics at 15
sites in the United Kingdom
bull CKD stages G1-G4 and A1-A3 (A3 only for G1 and G2)
bull Serum plasma whole blood urine DNA
bull Repeat assessment and biosample collection at 12 months
bull 15 will have had recent kidney biopsy
bull Central database modelled on RADAR MT
The Renal Risk in Derby Study
July 2008 to March 2010
bull 32 practices
bull 1822 people assessed
bull 1741 people included
Year 1 follow-up
bull 2009-2011
bull 1621 people reassessed
Year 5 follow-up
bull 2013-2015
bull 1064 people reassessed
Year 10 follow-up
bull 2018-2020
bull eGFR UACR outcomesMT
PI Maarten Taal
Salford Kidney Study
bull 3250 non-dialysis CKD patients recruited from 2002-present
bull 20 diabetic nephropathy 20 hypertensionARVD 17 chronic glomerulonephritis 7 ADPKD
bull Mean eGFR 34 mlmin mean age 68 yrs
bull Average follow-up 4 years
bull Many events approx 1200 mortality 800 RRT 350 CVE
PI Phil Kalra
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
PC looser networks HF PHT cardiac surgery
AIMS includehellip ldquoto enhance UK cardiovascular clinical research capacity and capabilityrdquo
httpwwwbcscompagesnews_fullaspNewsID=19792797
Diabetes UK Clinical Study Groups
Key Cohorts Relevant to Diabetes
UK Biobank
English Longitudinal Study of Ageing (ELSA)
Whitehall II
The Million Women Study
Avon Longitudinal Study of Parents and Children (ALSPAC)
Clinical Practice Research Datalink
UK Prospective Diabetes Study
SH
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
httpcardiorenalforumcom
The Cardiorenal Forum (CRF) is an independent group formed in 2006 The key objective of the group is to highlight the important clinical overlap that exists between patients presenting with a primary cardiovascular or renal problem Our annual scientific meeting is our most important event to bring together all involved in the management of such patients to share ideas and learn more about how to deliver high quality care
Cohort studies
UK Cohorts an overview
22 million people in the UK or 35 of the population are
participating in a cohort study
Across the UK there are ~34 large cohort population studies currently
ongoing
SH
Registered charity no 252892 Scottish charity no SC039245
bull 3000 Participants to be recruited from Nephrology Clinics at 15
sites in the United Kingdom
bull CKD stages G1-G4 and A1-A3 (A3 only for G1 and G2)
bull Serum plasma whole blood urine DNA
bull Repeat assessment and biosample collection at 12 months
bull 15 will have had recent kidney biopsy
bull Central database modelled on RADAR MT
The Renal Risk in Derby Study
July 2008 to March 2010
bull 32 practices
bull 1822 people assessed
bull 1741 people included
Year 1 follow-up
bull 2009-2011
bull 1621 people reassessed
Year 5 follow-up
bull 2013-2015
bull 1064 people reassessed
Year 10 follow-up
bull 2018-2020
bull eGFR UACR outcomesMT
PI Maarten Taal
Salford Kidney Study
bull 3250 non-dialysis CKD patients recruited from 2002-present
bull 20 diabetic nephropathy 20 hypertensionARVD 17 chronic glomerulonephritis 7 ADPKD
bull Mean eGFR 34 mlmin mean age 68 yrs
bull Average follow-up 4 years
bull Many events approx 1200 mortality 800 RRT 350 CVE
PI Phil Kalra
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
PC looser networks HF PHT cardiac surgery
AIMS includehellip ldquoto enhance UK cardiovascular clinical research capacity and capabilityrdquo
httpwwwbcscompagesnews_fullaspNewsID=19792797
Diabetes UK Clinical Study Groups
Key Cohorts Relevant to Diabetes
UK Biobank
English Longitudinal Study of Ageing (ELSA)
Whitehall II
The Million Women Study
Avon Longitudinal Study of Parents and Children (ALSPAC)
Clinical Practice Research Datalink
UK Prospective Diabetes Study
SH
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
Cohort studies
UK Cohorts an overview
22 million people in the UK or 35 of the population are
participating in a cohort study
Across the UK there are ~34 large cohort population studies currently
ongoing
SH
Registered charity no 252892 Scottish charity no SC039245
bull 3000 Participants to be recruited from Nephrology Clinics at 15
sites in the United Kingdom
bull CKD stages G1-G4 and A1-A3 (A3 only for G1 and G2)
bull Serum plasma whole blood urine DNA
bull Repeat assessment and biosample collection at 12 months
bull 15 will have had recent kidney biopsy
bull Central database modelled on RADAR MT
The Renal Risk in Derby Study
July 2008 to March 2010
bull 32 practices
bull 1822 people assessed
bull 1741 people included
Year 1 follow-up
bull 2009-2011
bull 1621 people reassessed
Year 5 follow-up
bull 2013-2015
bull 1064 people reassessed
Year 10 follow-up
bull 2018-2020
bull eGFR UACR outcomesMT
PI Maarten Taal
Salford Kidney Study
bull 3250 non-dialysis CKD patients recruited from 2002-present
bull 20 diabetic nephropathy 20 hypertensionARVD 17 chronic glomerulonephritis 7 ADPKD
bull Mean eGFR 34 mlmin mean age 68 yrs
bull Average follow-up 4 years
bull Many events approx 1200 mortality 800 RRT 350 CVE
PI Phil Kalra
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
PC looser networks HF PHT cardiac surgery
AIMS includehellip ldquoto enhance UK cardiovascular clinical research capacity and capabilityrdquo
httpwwwbcscompagesnews_fullaspNewsID=19792797
Diabetes UK Clinical Study Groups
Key Cohorts Relevant to Diabetes
UK Biobank
English Longitudinal Study of Ageing (ELSA)
Whitehall II
The Million Women Study
Avon Longitudinal Study of Parents and Children (ALSPAC)
Clinical Practice Research Datalink
UK Prospective Diabetes Study
SH
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
UK Cohorts an overview
22 million people in the UK or 35 of the population are
participating in a cohort study
Across the UK there are ~34 large cohort population studies currently
ongoing
SH
Registered charity no 252892 Scottish charity no SC039245
bull 3000 Participants to be recruited from Nephrology Clinics at 15
sites in the United Kingdom
bull CKD stages G1-G4 and A1-A3 (A3 only for G1 and G2)
bull Serum plasma whole blood urine DNA
bull Repeat assessment and biosample collection at 12 months
bull 15 will have had recent kidney biopsy
bull Central database modelled on RADAR MT
The Renal Risk in Derby Study
July 2008 to March 2010
bull 32 practices
bull 1822 people assessed
bull 1741 people included
Year 1 follow-up
bull 2009-2011
bull 1621 people reassessed
Year 5 follow-up
bull 2013-2015
bull 1064 people reassessed
Year 10 follow-up
bull 2018-2020
bull eGFR UACR outcomesMT
PI Maarten Taal
Salford Kidney Study
bull 3250 non-dialysis CKD patients recruited from 2002-present
bull 20 diabetic nephropathy 20 hypertensionARVD 17 chronic glomerulonephritis 7 ADPKD
bull Mean eGFR 34 mlmin mean age 68 yrs
bull Average follow-up 4 years
bull Many events approx 1200 mortality 800 RRT 350 CVE
PI Phil Kalra
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
PC looser networks HF PHT cardiac surgery
AIMS includehellip ldquoto enhance UK cardiovascular clinical research capacity and capabilityrdquo
httpwwwbcscompagesnews_fullaspNewsID=19792797
Diabetes UK Clinical Study Groups
Key Cohorts Relevant to Diabetes
UK Biobank
English Longitudinal Study of Ageing (ELSA)
Whitehall II
The Million Women Study
Avon Longitudinal Study of Parents and Children (ALSPAC)
Clinical Practice Research Datalink
UK Prospective Diabetes Study
SH
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
Registered charity no 252892 Scottish charity no SC039245
bull 3000 Participants to be recruited from Nephrology Clinics at 15
sites in the United Kingdom
bull CKD stages G1-G4 and A1-A3 (A3 only for G1 and G2)
bull Serum plasma whole blood urine DNA
bull Repeat assessment and biosample collection at 12 months
bull 15 will have had recent kidney biopsy
bull Central database modelled on RADAR MT
The Renal Risk in Derby Study
July 2008 to March 2010
bull 32 practices
bull 1822 people assessed
bull 1741 people included
Year 1 follow-up
bull 2009-2011
bull 1621 people reassessed
Year 5 follow-up
bull 2013-2015
bull 1064 people reassessed
Year 10 follow-up
bull 2018-2020
bull eGFR UACR outcomesMT
PI Maarten Taal
Salford Kidney Study
bull 3250 non-dialysis CKD patients recruited from 2002-present
bull 20 diabetic nephropathy 20 hypertensionARVD 17 chronic glomerulonephritis 7 ADPKD
bull Mean eGFR 34 mlmin mean age 68 yrs
bull Average follow-up 4 years
bull Many events approx 1200 mortality 800 RRT 350 CVE
PI Phil Kalra
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
PC looser networks HF PHT cardiac surgery
AIMS includehellip ldquoto enhance UK cardiovascular clinical research capacity and capabilityrdquo
httpwwwbcscompagesnews_fullaspNewsID=19792797
Diabetes UK Clinical Study Groups
Key Cohorts Relevant to Diabetes
UK Biobank
English Longitudinal Study of Ageing (ELSA)
Whitehall II
The Million Women Study
Avon Longitudinal Study of Parents and Children (ALSPAC)
Clinical Practice Research Datalink
UK Prospective Diabetes Study
SH
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
The Renal Risk in Derby Study
July 2008 to March 2010
bull 32 practices
bull 1822 people assessed
bull 1741 people included
Year 1 follow-up
bull 2009-2011
bull 1621 people reassessed
Year 5 follow-up
bull 2013-2015
bull 1064 people reassessed
Year 10 follow-up
bull 2018-2020
bull eGFR UACR outcomesMT
PI Maarten Taal
Salford Kidney Study
bull 3250 non-dialysis CKD patients recruited from 2002-present
bull 20 diabetic nephropathy 20 hypertensionARVD 17 chronic glomerulonephritis 7 ADPKD
bull Mean eGFR 34 mlmin mean age 68 yrs
bull Average follow-up 4 years
bull Many events approx 1200 mortality 800 RRT 350 CVE
PI Phil Kalra
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
PC looser networks HF PHT cardiac surgery
AIMS includehellip ldquoto enhance UK cardiovascular clinical research capacity and capabilityrdquo
httpwwwbcscompagesnews_fullaspNewsID=19792797
Diabetes UK Clinical Study Groups
Key Cohorts Relevant to Diabetes
UK Biobank
English Longitudinal Study of Ageing (ELSA)
Whitehall II
The Million Women Study
Avon Longitudinal Study of Parents and Children (ALSPAC)
Clinical Practice Research Datalink
UK Prospective Diabetes Study
SH
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
Salford Kidney Study
bull 3250 non-dialysis CKD patients recruited from 2002-present
bull 20 diabetic nephropathy 20 hypertensionARVD 17 chronic glomerulonephritis 7 ADPKD
bull Mean eGFR 34 mlmin mean age 68 yrs
bull Average follow-up 4 years
bull Many events approx 1200 mortality 800 RRT 350 CVE
PI Phil Kalra
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
PC looser networks HF PHT cardiac surgery
AIMS includehellip ldquoto enhance UK cardiovascular clinical research capacity and capabilityrdquo
httpwwwbcscompagesnews_fullaspNewsID=19792797
Diabetes UK Clinical Study Groups
Key Cohorts Relevant to Diabetes
UK Biobank
English Longitudinal Study of Ageing (ELSA)
Whitehall II
The Million Women Study
Avon Longitudinal Study of Parents and Children (ALSPAC)
Clinical Practice Research Datalink
UK Prospective Diabetes Study
SH
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
Medical Directorate of the CRN 31 Specialties in 6 clusters
The Cluster Offices are hosted by higher education institutions
PC looser networks HF PHT cardiac surgery
AIMS includehellip ldquoto enhance UK cardiovascular clinical research capacity and capabilityrdquo
httpwwwbcscompagesnews_fullaspNewsID=19792797
Diabetes UK Clinical Study Groups
Key Cohorts Relevant to Diabetes
UK Biobank
English Longitudinal Study of Ageing (ELSA)
Whitehall II
The Million Women Study
Avon Longitudinal Study of Parents and Children (ALSPAC)
Clinical Practice Research Datalink
UK Prospective Diabetes Study
SH
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
PC looser networks HF PHT cardiac surgery
AIMS includehellip ldquoto enhance UK cardiovascular clinical research capacity and capabilityrdquo
httpwwwbcscompagesnews_fullaspNewsID=19792797
Diabetes UK Clinical Study Groups
Key Cohorts Relevant to Diabetes
UK Biobank
English Longitudinal Study of Ageing (ELSA)
Whitehall II
The Million Women Study
Avon Longitudinal Study of Parents and Children (ALSPAC)
Clinical Practice Research Datalink
UK Prospective Diabetes Study
SH
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
Diabetes UK Clinical Study Groups
Key Cohorts Relevant to Diabetes
UK Biobank
English Longitudinal Study of Ageing (ELSA)
Whitehall II
The Million Women Study
Avon Longitudinal Study of Parents and Children (ALSPAC)
Clinical Practice Research Datalink
UK Prospective Diabetes Study
SH
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
Key Cohorts Relevant to Diabetes
UK Biobank
English Longitudinal Study of Ageing (ELSA)
Whitehall II
The Million Women Study
Avon Longitudinal Study of Parents and Children (ALSPAC)
Clinical Practice Research Datalink
UK Prospective Diabetes Study
SH
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
DARE ndash a suggested way forward
bull DIABETES ALLIANCE FOR
RESEARCH IN ENGLAND
(DARE)
bull The DARE Study is a nationwide
collaboration between patients
and professionals to provide a
research resource to enable
further study into the causes and
complications of diabetes
bull This study has established an
epidemiological based sample of
patients with diabetes within the
Exeter region and nationwide
bull The information gathered can act
as a resource and platform for
many different forms of diabetes
research including multimorbidity
bull Recruitment finished 31 July 2017
bull The DARE study has recruited both
individuals with diabetes and also
partners spouses and friends who
do not have a family history of
diabetes (control group)
bull This will enable the comparison of
people who have diabetes with
those of a similar age and
environmental exposure who do not
have diabetes
bull 62044 participants
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
Genetics of Obesity Study network
bull 3500 recruits on portfolio (gt 7000 as cohort preceded NIHR)
bull Multiple publications and new genes etc
bull Led by Prof Sadaf Farooqi Cambridge
bull Personalised medicine for morbid obesity study (2000+ recruited)
JW
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
Metabolic and Endocrine (other)
1 Rare inherited metabolic disease a Glycogen storage diseases b Pompes c Gauchersd alkaptonuria (Liverpool)
2 Endocrine disease ndash cohorts including for pituitary disease thyroid disease genetics of endocrine tumours
JW
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
TR
Global Alliance of Independent Networks for Stroke research (GAINS)
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
The aims of the SSNAP clinical audit are
bull To benchmark services regionally and nationally
bull To monitor progress against a background of organisational change to stroke services and the NHS
bull To support clinicians in identifying where improvements are needed planning for and lobbying for change and
celebrating success
bull To empower patients to ask searching questions
httpswwwstrokeauditorgAbout-SSNAPSSNAP-Clinical-Auditaspx
TR
95 case ascertainment
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
TRhttpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
NIHR allied stroke activities
bull Annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke Physicians
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
RemitldquoTo describe research networks and existing cohorts to showcase platforms for future researchrdquo
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
Thanks to
bull Paul Clift (cardiovascular)
bull John Wilding (metabolic)
bull John Pepper (cardiovascular)
bull Simon Heller (diabetes)
bull Adrian Heald (diabetes)
bull Phil Kalra (Renal)
bull Tom Robinson (Stroke)
bull Emanuela Mariani (Cluster A)
bull Maarten Taal (Renal)
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
Further Reading Sources of Cohort Information
Cohort and Longitudinal Studies Enhancement Resource (Closer) Rebecca Hardy - UCL
Organisation that brings together data from 8 longitudinal studies in the UK
Conduct data harmonisation and link government data to cohorts
Also have a unique search engine for researchers
Provide training to researchers on longitudinal studies
Fund research utilising data from longitudinal studies
Leverage outcomes of longitudinal research for maximum impact
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
bull 1 Global Alliance of Independent Networks for Stroke research (GAINS)bull This is a global alliance of stroke research networks that typically meets aligned to the main American and European stroke meetings The website
link provides the main features of GAINSbull httpswwwglobalstroketrialsorgbull
bull 2 Sentinel Stroke National Audit Programmebull This is the national (England Wales and Northern Ireland) stroke audit with approximately 95 case ascertainment for hospital admitted strokes
Again the website links provides a comprehensive overview of the data that can be accessedbull httpswwwstrokeauditorgbull
bull 3 NIHR allied stroke activitiesbull These include an annual call for stroke writing groups and an annual research workshop both in association with the British Association of Stroke
Physicians I have attached the call in respect of the former and the weblink in respect of the latterbull httpswwwbmhmanchesteracukconferences-meetingsuk-stroke-research-workshop
bull Tom Robinson
Specialty Specific Networks
Specialty Specific Networks