day one: 5 october 2016 - guysandstthomasevents.co.uk · day one: 5 october 2016 08.00-09.00...
TRANSCRIPT
Theme: Improving patient experience for people living with sickle cell disease and thalassaemias
Day One: 5 October 2016
08.00-09.00 REGISTRATION
09.00-10.50 Session 1 - Overview of sickle cell disease
09.00-09.05 Marian Ridley, Director, Evelina London Children’s Hospital, Guy’s and St
Thomas’ NHS Foundation Trust
Welcome address
09.05-09.10 Chair: Hadiza Buhari, SCORE
Welcome and introduction
09.10-09.50 Dr Baba Inusa, Honorary Reader, Paediatric Haematology, Evelina London Children’s Hospital 10th Anniversary: Overview of sickle cell disease - Paediatric perspectives
09.50-10.20 Dr Biree Andemariam, Associate Professor, Hematology/Oncology, Director,
New England Sickle Cell Institute and Director, Connecticut Bleeding Disorders Center,
University of Connecticut, USA
Sickle Cell Disease in the Adult: An Overview
10.20-10.50 Professor Sebastian Lucas, Emeritus Professor of Pathology, Guy’s and St
Thomas’ NHS Foundation Trust
Pathological changes in SCD
10.50-11.10 REFRESHMENT BREAK
11.10 -13.35 Session 2 - Parallel sessions
A - Understanding and improving patient experiences: transition, pain, and treatment
adherence
Theme: Improving patient experience for people living with sickle cell disease and thalassaemias
11.10-11.15 Chair: Dr Marsha Treadwell, Clinical Psychologist and Clinical and Health Ser-
vices Researcher, UCSF Benioff Children’s Hospital Oakland
Welcome and introduction
11.15-11.30 Abstract - Brenda Poku, University of Manchester
An Integrative Narrative Review on the Unique Experiences of Adolescents Living with Sickle
Cell Disease
11.30-11.55 Dr Subarna Chakravorty, Consultant Paediatric Haematologist and Honorary
Clinical Senior Lecturer, King’s College Hospital
Understanding the experiences of people living with sickle cell disease - a UK-wide study
11.55-12.20 Dr Marsha Treadwell, Clinical Psychologist and Clinical and Health Services
Researcher, UCSF Benioff Children’s Hospital Oakland
Patient Reported Outcomes for the Hemoglobinopathies
12.20-12.45 Dr Jerlym Porter, Assistant Member, Department of Psychology, St. Jude
Children’s Research Hospital
Transition skills training
12.45-13.10 Simon Robertson, CEO, kindVR and Co-Investigator, Hematology/Oncology,
UCSF Benioff Children's Hospital Oakland
Virtual reality as a complementary therapy to improve pain in sickle cell disease
13.10-13.35 Dr Kofi Anie, Consultant Psychologist & Honorary Clinical Senior Lecturer,
London North West Healthcare NHS Trust & Imperial College London
Treatment Challenges & Adherence: Understanding Patients
B - Chronic organ damage session on the pulmonary, bone, renal and neurologic systems
11.10-11.15 Chair: Dr Andrew Campbell
Director, Pediatric Comprehensive Hemoglobinpathies Program, University of Michigan
Theme: Improving patient experience for people living with sickle cell disease and thalassaemias
Co-Director, Minority Health International Research Training Program, University of
Michigan and Director, The CASiRe Consortium
Welcome and introduction
11.15-11.35 Professor Fenella Kirkham, Developmental Neuroscience, UCL Institute of
Child Health
Cognition, oxygen desaturation and sleep in sickle cell disease
11.35-11.55 Dr Jamie Kawadler, Developmental Neuroscience, UCL Institute of Child
Health
Magnetic resonance imaging (MRI) as both a qualitative and quantitative tool for detecting
brain abnormality in sickle cell disease
11.55-12.15 Dr Claire Sharpe, Reader and Honorary Consultant in Renal Medicine, King’s
College Hospital
Renal Complications of sickle cell disease
12.15-12.35 Professor Elizabeth Klings, Associate Professor of Medicine, Boston University
School of Medicine, Director, Center for Excellence in Sickle Cell Disease and
Attending Physician in the Section of Pulmonary, Critical Care and Allergy at Boston
Medical Center
Pulmonary HTN (can include Pulm Complications in SCD)
12.35-12.55 Dr Caterina Minniti, Professor of Clinical Medicine and Pediatrics,
Einstein College of Medicine
Chronic organ damage in Sickle Cell Disease
12.55-13.15 Deepika Darbari, M.D, Attending Physician, Division of Hematology, Center for
Cancer and Blood Disorders, Children's National Medical Center, Associate Professor of
Pediatrics, George Washington University School of Medicine and Health Sciences,
Washington, D.C.
Deconstructing Pain in Sickle Cell Disease: Sickling, Sensitivity and Centralization
Theme: Improving patient experience for people living with sickle cell disease and thalassaemias
13.15-13.35 Marcus Bankes, Consultant Orthopaedic Surgeon, Guy's and St Thomas' NHS
Foundation Trust
Avascular necrosis in Sickle Cell Disease
13.35-14.30 LUNCH, EXHIBITION AND NETWORKING
13.35-13.55 Session sponsored by Terumo BCT
Dr Jo Howard, Consultant Haematologist and Clinical Lead/ Honorary Reader in
Haemoglobinopathies, Guy's and St Thomas' NHS Foundation Trust
NICE guidance on Spectra Optia for automatic red blood cell exchange in patients with sickle
cell disease
14.30-15.45 Session 3 - Parallel sessions
A - Basic and Translational Research in Sickle Cell Disease - US Centers of Excellence in Hemoglobinopathy Research 14.30-14.35 Chair: Professor Solomon Ofori-Acquah, Associate Professor and Director Center for Translational and International Hematology, Vascular Medicine Institute, University of Pittsburgh Welcome and introduction 14.35-15.05 Dr Kenneth Ataga, Professor of Medicine and Director, University of North Carolina Comprehensive Sickle Cell Program Endothelial Dysfunction and Albuminuria in Sickle Cell Disease 15.05-15.20 Abstract - Martin Safo, Virginia Commonwealth University Anti-sickling Properties of a Novel Structurally-Enhanced Class of Allosteric Hemoglobin Effectors 15.20-15.45 Professor Kalpna Gupta, Division of Hematology Oncology and Transplantation, Department of Medicine Co-Chair: Tumor Microenvironment Program, Masonic Cancer Center Co-Chair: Molecular and Cellular Engineering Program, Institute for Engineering in Medicine Promising strategies to treat pain in sickle cell disease B - Neuro-imaging Diagnostic and case studies 14.30-14.35 Chair: Professor Fenella Kirkham, Developmental Neuroscience, UCL Institute of Child Health Welcome and introduction
Theme: Improving patient experience for people living with sickle cell disease and thalassaemias
14.35-14.50 Abstract - Hanne Stotesbury, UCL Great Ormond Street Institute of Child Health Processing Speed Index in Paediatric Sickle Cell Disease: a Systematic Review and Meta-analysis 14.50-15.20 Dr Soundrie Padayachee, Consultant Clinical Scientist, Ultrasonic Angiology, Guy’s and St Thomas’ NHS Foundation Trust Revised Standards for TCD Screening of Children with Sickle Cell Disease 15.20-15.35 Abstract - Fiona Kirkham, King’s College Medical School Nocturnal Desaturation and Proteinuria in Children with Sickle Cell Disease 15.35-16.00 REFRESHMENT BREAK
Session 3 - Parallel sessions continued
A - Basic and Translational Research in Sickle Cell Disease - US Centers of Excellence in Hemoglobinopathy Research 16.00-16.15 Abstract - Siana Nkya, The Muhimbili University of Health and Allied Sciences (MUHAS) Detailed investigation of genetic determinants of fetal haemoglobin in individuals with sickle cell disease in Tanzania 16.15-16.40 Professor Solomon Ofori-Acquah, Associate Professor and Director Center for Translational and International Hematology, Vascular Medicine Institute, University of Pittsburgh Role of the Nrf2 cytoprotective transcription factor in progression of sickle cell disease with aging
16.40-17.00 Discussion
B - Neuro-imaging Diagnostic and case studies
16.00-16.30 Professor Michael Dowling, Associate Professor of Pediatrics and Neurology
and Neurotherapeutics, University of Texas Southwestern Medical Center at Dallas,
Children's Medical Center Dallas
Clinical Features of Stroke in Children with SCA: Results of the PFAST Study
16.30-17.00 Dr Ata Siddiqui, Paediatric Neuro-radiologist, Guy’s and St Thomas NHS
Theme: Improving patient experience for people living with sickle cell disease and thalassaemias
Foundation Trust Neuro-imaging in SCD - Case Studies
17.00 Conference close
Day Two: 6 October 2016
08.00-08.30 REGISTRATION
08.30-11.00 Session 1 – Parallel sessions – Global perspectives
A - Europe and the Middle East: challenges and opportunities in the migration era
08.30-08.35 Chair: Dr Raffaella Colombatti, Clinic of Pediatric Hematology Oncology, Azienda Ospedaliera - University of Padova Welcome and introduction 08.35-08.55 Eugene Oteng-Ntim, Consultant Obstetrician, Guy's and St Thomas' NHS Foundation Trust and Honorary Reader in Women's Health, Women's Health Academic Centre Sickle Cell Disease and pregnancy: Potential novel therapies 08.55-09.15 Dr Elena Cela, Consultant Pediatric Hematologist, Pediatric Hematology Unit,
Hospital General Universitario Gregorio Marañón, Facultad Medicina Universidad
Complutense Madrid
National registry and national newborn screening - the Spanish Experience in Sickle cell
Disease
09.15-09.35 Dr Miguel Abboud, Professor and Chairman, Department of Pediatrics and
Adolescent Medicine, American University of Beirut - Medical Center, Children’s Cancer
Center of Lebanon, Beirut, Lebanon
Impact of the Syrian refugees crisis on the management of children with
hemoglobinopathies in a tertiary care center in Lebanon
09.35-09.55 Dr Meaad K. Hassan, Professor at the Department of Pediatrics, College of
Medicine, Basrah University, Basrah, Iraq
Theme: Improving patient experience for people living with sickle cell disease and thalassaemias
Health-Related Quality of Life (HRQoL) of patients with Thalassemia and Sickle Cell Disease
and the impact of these diseases on families
09.55-10.15 Professor Bijan Keikhaei Dehdezi, Associate Professor, Department of
Pediatrics Hematalogy Oncology, Health Research Institute, Research Centre of
Thalassemia and Hemoglobinopathies, Ahvaz Jundishapur University of Medical Sciences
Stroke surveillance and TCD screening in the patient with High-HbF - the Iranian experience
10.15-10.35 Dr Stephan Lobitz, Department of Pediatric Oncology / Hematology Charité -
University Medicine Berlin
Emerging haemoglobinopathies services: the role of digital technology - the German
example
10.35-11.00 Discussion
B - Priorities for sickle cell disease in Africa and India
08.30-08.45 Abstract - Raffaella Colombatti, Azienda Ospedaliera-Università di Padova
Association between a combination of single nucleotide polymorphisms and large vessel
cerebral vasculopathy in African children with sickle cell disease
08.45-08.55 Chair: Professor Kwaku Ohene-Frempong, Emeritus Professor CE of Pediatrics,
University of Pennsylvania School of Medicine and Director Emeritus, Comprehensive
Sickle Cell Center, Children’s Hospital of Philadelphia
Welcome and introduction
08.55-09.15 Dr Dipty Jain, Professor and Chair, Department of Pediatrics, Indira Gandhi
Government Medical College, Nagpur, India and Member Advisory Board, Global Sickle
Cell Disease Network
Sickle Cell Anemia from Central India: the journey so far
09.15-09.35 Professor Léon Tshilolo, Director of the Educational and Training Center,
Centre Hospitalier Monkole in Kinshasa, DRC
Theme: Improving patient experience for people living with sickle cell disease and thalassaemias
National Development of SCD Programmes in Congo DR
09.35-09.55 Dr Mohamed Cherif Rahimy, Comprehensive Sickle Cell Centre, Benin Republic
Update on Benin SCD programme
09.55-10.15 Professor Kwaku Ohene-Frempong, Emeritus Professor CE of Pediatrics,
University of Pennsylvania School of Medicine and Director Emeritus, Comprehensive
Sickle Cell Center, Children’s Hospital of Philadelphia
Clinical Research in Sub-Saharan Africa; Present and Future perspectives
10.15-10.35 Dr Alexis Thompson, Hematology Section Head, Ann & Robert H. Lurie
Children's Hospital of Chicago
American Society for Hematology (ASH) Sickle Cell Summit: Strategy for Sub-Saharan Africa
10.35-11.00 Discussion
11.00-11.30 REFRESHMENT BREAK
11.30-17.00 – Session 2 - Main themes in thalassaemia
11.30-11.35 Chair: Professor Ali Taher, Professor of Medicine, Hematology & Oncology-
American University of Beirut Medical Center, Beirut – Lebanon and Dr Banu Kaya,
Consultant Haematologist, Department of Paediatric Haematology and Oncology, Royal
London Hospital, Barts Health NHS Trust
Welcome and introduction
11.35-12.05 Dr Aileen Marshall, Consultant Hepatologist, Royal Free Hospital NHS Trust
Hepatocellular carcinoma - An Emerging problem in Thalassaemia
12.05-12.35 Dr Fred Piel, Lecturer in Epidemiology, Imperial College London
Changing epidemiology in inherited disorders
Theme: Improving patient experience for people living with sickle cell disease and thalassaemias
12.35-13.05 Dr Antonis Kattamis, Associate Professor of Pediatric Hematology-Oncology,
University of Athens
Changing patterns of morbidity and mortality in transfusion-dependent-thalassemia
13.05-13.35 Dr Vip Viprakasit, Professor in Pediatrics, Department of Paediatrics and
Thalassaemia Centre, Siriraj Hospital, Mahidol University, Thailand
Alpha Thalassaemia and Hb E/Beta Thalassaemia-clinical course and disease modifiers
13.35-14.30 LUNCH, EXHIBITION AND NETWORKING
14.30-15.00 Professor Marina Cavazzana, Director of Hematology, Head of Biotherapy
Department, Necker Hospital
Gene Therapy for hemoglobinopathies
15.00-15.30 Professor Gidon Lieberman, Consultant Gynaecologist / Honorary Senior
Lecturer, Fertility Lead & HFEA Person Responsible, Whittington Health
Fertility in thalassaemia
15.30-15.45 REFRESHMENT BREAK
15.45-16.15 Professor Ali Taher, Professor of Medicine, Hematology & Oncology-American
University of Beirut Medical Center, Beirut – Lebanon
Evidence-Based Approach to Managing Non-Transfusion-Dependent Thalassemias (NTDT)
16.15-16.45 Professor John Porter, Professor of Haematology and Consultant
Haematologist, University College London Hospitals and Head of the Joint Red Cell Unit for
UCLH and Whittington Hospitals
Future perspectives in the management of TDT and NTDT
16.45-17.00 Caron Lawson and Melinda Edwards, Evelina London Engagement
What does quality healthcare look like to young adults and adolescents? Ask the experts!
17.00-19.00 Poster walk and faculty networking drinks reception
Theme: Improving patient experience for people living with sickle cell disease and thalassaemias
19.00-23.00 Conference dinner (by invitation or limited tickets available)
Day Three: 7 October 2016
08.00-08.30 REGISTRATION
08.30-11.30 Session 1 - Parallel sessions
A – Genetics and genomics for haemoglobinopathies
08.30-08.40 Chair: Dr Stephan Menzel, Non-clinical Senior Lecturer, King's College London Welcome and introduction 08.40-09.10 Dr Barnaby Clark, Consultant Clinical Scientist, King’s College Hospital and Honorary Senior Lecturer, King’s College London University Application of Next Generation Sequencing to Haemoglobinopathy Diagnosis 09.10-09.40 Dr Mohamed Cherif Rahimy, Comprehensive Sickle Cell Centre, Benin Republic Genetics and Genomics for Hemoglobinopathies: The case of Sickle Cell Disease
09.40-10.10 Professor David Roberts, Haematologist and Principal Investigator, NHS Blood and Transplant Thousands of genetic variants modulate blood cell variation and function in humans
10.10-10.40 Elizabeth Traxler, Department of Hematology, St. Jude Children’s Research
Hospital
Genome editing recreates Hereditary Persistence of Fetal Hemoglobin
10.40-11.10 Professor Dagan Wells, Associate Professor at the University of Oxford /
Director at Reprogenetics UK
New technique of karyomapping for PGD
11.10-11.30 Discussion
Theme: Improving patient experience for people living with sickle cell disease and thalassaemias
11.30 – 12.00 REFRESHMENT BREAK
B – Haemoglobinopathy morphology and clinical case scenarios
08.30-08.35 Chair: Dr Rachel Kesse-Adu, Consultant Haematologist, Guy's and St Thomas'
NHS Foundation Trust
Welcome and introduction
08.35-08.50 Asbtract - Camila Cabral, Guy's and St Thomas' NHS Foundation Trust and Evelina London Children's Hospital Evaluation and patient satisfaction of a sickle cell disease (SCD) Transition service in London
08.50-09.20 Dr Vishal Jayakar, Consultant Haematologist, Kingston NHS Foundation Trust
and Honorary Senior Lecturer, Imperial College London
Playing Sherlock Holmes!
09.20-09.50 Dr Chris Lambert, Service Delivery Manager – Haematology, Haematology
Department, King’s College Hospital
Laboratory diagnosis of Haemoglobinopathies (with HPLC cases)
09.50-10.20 Dr Emma Drasar, Consultant Haematologist, Whittington Hospital NHS
Thalassaemia case scenarios
10.20-10.50 Dr Rachel Kesse-Adu, Consultant Haematologist, Guy's and St Thomas' NHS
Foundation Trust
Sickle Case Studies
10.50-11.20 Dr Banu Kaya, Consultant Haematologist, Department of Paediatric
Haematology and Oncology, Royal London Hospital, Barts Health NHS Trust
Paediatric haemoglobinopathy case studies
11.20-11.30 Discussion
11.30 – 12.00 REFRESHMENT BREAK
Theme: Improving patient experience for people living with sickle cell disease and thalassaemias
12.00-13.00: Session 2 - Patient voice
12.00-12.10 Chair: John James, Chief Executive, Sickle Cell Society
Welcome and introduction
12.10-12.20 Placida Acheru
My recovery from critical illness
12.20-12.30 Nikos Tsouknidas
My experience of thalassemia management in three different countries
12.30-12.40 Said Oriola
My experience of mentoring young people with sickle cell disease
12.40-12.50 Khadiza Shantali, Coordinator, Kebbi Sickle Cell Association (KESCA)
No barriers
12.50-13.00 Discussion
13.00-14.00 LUNCH, EXHIBITION AND NETWORKING
14.00-15.30 SESSION 3 - PARALLEL SESSIONS
A - New drug therapies
14.00-14.30 Chair: Professor Winfred Wang, Member, Department of Hematology, St. Jude
Children’s Research Hospital
Brief overview and update on hydroxyurea and organ function
14.30-15.00 Professor Matt Heeney, Associate Chief, Hematology; Director, Sickle Cell
Program, Dana-Farber/Boston Children’s Cancer and Blood Disorders Center
Anti-adhesion agents such as Prasugrel, Selexys and Rivipansel
Theme: Improving patient experience for people living with sickle cell disease and thalassaemias
15.00-15.30 Professor Greg Kato, Professor of Medicine, Division of Hematology-Oncology,
Pittsburgh Heart, Lung, Blood and Vascular Medicine Institute, University of Pittsburgh
School of Medicine
Augmenting Nitric Oxide Signaling in SCD
B - Nursing issues in haemoglobinopathies
14.00-14.25 Nkechi Anyanwu, Clinical Nurse Manager (Haemoglobinopathies), Sickle Cell
& Thalassaemia Community Services
Role of the community nurse
14.25-15.05 Sharon Ndoro, Senior Research Nurse, Guy's and St Thomas' NHS Foundation
Trust and Bessie Crone, Senior Paediatric Research Nurse, Barts Health NHS Trust
Challenges of recruiting patients into research
15.05-15.30 Luhanga Musumadi, Advanced Nurse Practitioner Haemoglobinopathies &
Lead nurse for Adolescent Transition, Guy's and St Thomas' NHS Foundation Trust
New innovations in clinical communication with young people
15.30 – 15.50 REFRESHMENT BREAK
15.50 – 16.35 PARALLEL SESSIONS CONTINUED
A - New drug therapies
15.50-16.20 Dr Jo Howard, Consultant Haematologist and Clinical Lead/ Honorary Reader
in Haemoglobinopathies, Guy's and St Thomas' NHS Foundation Trust
Haemoglobin modifiers such as GBT-440
16.20-16.35 Abstract - Dr Baba Inusa, Course Director, Evelina Children’s Hospital and
Guy's and St Thomas' NHS Foundation Trust
Theme: Improving patient experience for people living with sickle cell disease and thalassaemias
Geographic Differences in Phenotype and Treatment of Children with Sickle Cell Anemia from the Multinational DOVE Study
B - Nursing issues in haemoglobinopathies
15.50-16.05 Abstract - Dimitris Tsitsikas, Homerton University Hospital
A 5-Year Cost Analysis of Automated Red Cell Exchange Transfusion for the Management of
Recurrent Painful Crises in Adult Patients with Sickle Cell Disease in the UK: Inequality
Between Savings Achieved for the Health Service and Cost Burden to Care Providers
16.05-16.30 Kemi Ajamufua, Specialist Nurse Team Leader, Guy's and St Thomas' NHS
Foundation Trust
Case Study (Community)
16.35 Conferences close