PATIENT RECRUITMENT: Site Type A

NephroS – National Study of Nephrotic Syndrome

Newsletter: December 2017

Thank you to all our colleagues for their continued efforts and support on the NephroS study. The total accrual from our children sites listed below is 584 patients and the total accrual from our adult sites is 467 patients. This is a total of 1051 patients recruited! We would like to congratulate all our colleagues on the EXCELLENT work this year!

We would like to welcome the following sites that have joined us in 2017: Walsall Healthcare NHS Trust (Adult and Paediatric site); York Teaching Hospital NHS Foundation Trust (adult site); Royal Cornwall Hospitals NHS Trust (Adult site); Lancashire Teaching Hospitals NHS Foundation Trusts, including satellite sites Blackpool Victoria Hospital, Lytham Health Centre and East Lancs NHS Trust (Adult sites); Cambridge University Hospital NHS Trust (Adult site); Norfolk and Norwich University Hospital NHS Foundation Trust (Paediatric site); Hull and East Yorkshire Hospitals NHS Trust (Paediatric site); University Hospital Leicester NHS Trust (Adult and Paediatric site); Epsom and St. Helier University Hospital NHS Trust (Adult and Paediatric site); Plymouth Hospitals NHS Trust (Paediatric site); Dudley Group NHS Foundation Trust (Adult and Paediatric site); Derby Teaching Hospital NHS Foundation Trust (Adult site type B); Royal Free London NHS Foundation Trust (Adult site type B); Salford Royal NHS Foundation Trust (Adult site type B); Portsmouth Hospitals NHS Trust (Adult

of December 2019, therefore please keep up the good

PATIENT RECRUITMENT: Site Type B

NURTuRE - the National Unified Renal Translational Research Enterprise

NURTuRE is a national initiative that aims to rapidly recruit additional patients to the NephroS cohort in 11 selected centres across the UK (termed NURTuRE-NephroS). This is in collaboration with a cohort for Chronic Kidney Disease (CKD) called NURTuRE-CKD (www.nurturebiobank.og). It is kick-start funded by a partnership of industry collaborators and Kidney Research UK. A key aspect is the collection of extensive consented biosamples, stored at the UK National Biobank in Milton Keynes.

NURTuRE will become an established infrastructure for the creation of deeply phenotyped cohorts with carefully collected and stored biosamples available for current and future research projects.

MRC Stratified Medicine Grant success

We are very pleased to announce a recent grant success from the Medical Research Council, for a project entitled: NURTuRE – changing the landscape of renal medicine to foster a unified approach to stratified medicine. This is an ambitious project aiming to use the valuable samples and clinical data collected in the NURTuRE-NephroS registry, and generate new data and methods that will allow us to redefine the diagnostic categories of Nephrotic Syndrome, in order to provide individualised diagnostic tests and new therapies. This

We would like to welcome the following sites that have joined us in 2017: Walsall Healthcare NHS Trust (Adult and Paediatric site); York Teaching Hospital NHS Foundation Trust (adult site); Royal Cornwall Hospitals NHS Trust (Adult site); Lancashire Teaching Hospitals NHS Foundation Trusts, including satellite sites Blackpool Victoria Hospital, Lytham Health Centre and East Lancs NHS Trust (Adult sites); Cambridge University Hospital NHS Trust (Adult site); Norfolk and Norwich University Hospital NHS Foundation Trust (Paediatric site); Hull and East Yorkshire Hospitals NHS Trust (Paediatric site); University Hospital Leicester NHS Trust (Adult and Paediatric site); Epsom and St. Helier University Hospital NHS Trust (Adult and Paediatric site); Plymouth Hospitals NHS Trust (Paediatric site); Dudley Group NHS Foundation Trust (Adult and Paediatric site); Derby Teaching Hospital NHS Foundation Trust (Adult site type B); Royal Free London NHS Foundation Trust (Adult site type B); Salford Royal NHS Foundation Trust (Adult site type B); Portsmouth Hospitals NHS Trust (Adult

NURTuRE – Site Type B

NURTuRE sites also known as ‘NephroS site type B’ from the protocol have been open to recruitment from October 2017 and have so far recruited 30 patients into the study.

This has resulted from the success of the NephroS study and we would like to thank all original colleagues from Site Type A that have made this possible.

For correct data entry for each patient every 6 months please use the following check list:

Keep Primary Diagnosis up to date. Do not remove previous notes or primary diagnosis Add a “NEW” Primary diagnosis so that we can track progression of disease If patient is INS-steroids Not Tried please state why in the comment box

Postal address is correct and up to date. Ethnicity is stated. Family history is labelled as either YES or NO.

If YES, please specify if this is maternal or paternal If unknown please ask the clinician or patient at their next appointment If unknown to patient please state this in the comment box

Biopsy results are uploaded in the Pathology tab. Any patient with a transplant must be noted of in the “Transplant” tab. If CKD5 or stages 3A upwards please enter the date of End Stage Renal Failure on the bottom of the

“Primary Diagnosis” tab. Re-consenting child patients as adults.

There is a window from 16 – 18 years old Please use the correct version of the RaDaR consent form (31.10.2017 –

details on the RaDaR homepage and Consent tab in RaDaR).

Clinical data update is required every 6 months (twice a year at regular clinical appointments). With Patient View the Results and Medication fields will be automatically populated, however in order to provide us all other clinical information could you please copy and paste anonymised clinical letters into the comments section of the Clinical Pictures tab. If you have any questions or issues regarding clinical data or if any member of your team would like a telephone tutorial on data entry into RaDaR for the NephroS study please contact Maryam Afzal (maryam.afzal@bristol.ac.uk).

We hope that this year’s event will be as successful with patients and their families as previous years have been. We aim to have an additional number of spaces available for research staff at our collaborating centres, details of which will be announced in the New Year.

MRC Stratified Medicine Grant success

We are very pleased to announce a recent grant success from the Medical Research Council, for a project entitled: NURTuRE – changing the landscape of renal medicine to foster a unified approach to stratified medicine. This is an ambitious project aiming to use the valuable samples and clinical data collected in the NURTuRE-NephroS registry, and generate new data and methods that will allow us to redefine the diagnostic categories of Nephrotic Syndrome, in order to provide individualised diagnostic tests and new therapies. This

NATIONAL NEPHROTIC SYNDROME PATIENT DAY 2018

CLINICAL DATA CHECK LIST

UNIVERSITY CLOSURE OVER CHRISTMAS PERIOD 15TH DEC 2017 – 2ND JAN 2018

Due to University closure over the Christmas period please do not send blood or PEX samples as there will be no one available to collect and process them. Last samples should be sent on Friday 15 th Dec 2017 and keep any bloods/PEX samples in the fridge and send them in the New Year. Samples can be sent again from Tuesday the 2nd of January 2018. If patients are consented in this period please be mindful to collect samples at their next appointment.

For more information or any queries regarding the study please contact the Chief Investigator, Prof Moin Saleem (Moin.Saleem@bristol.ac.uk), or Trial Coordinators Dr Maryam Afzal (Maryam.afzal@bristol.ac.uk) and Liz Colby (Liz.Colby@bristol.ac.uk). NephroS Tel: 0117 331 3106.

We wish all our colleagues a VERY MERRY CHRISTMAS AND A HAPPY

NEW YEAR!