Day One: 5 October 2016

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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

10^th 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

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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

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Co-Director, Minority Health International Research Training Program, University of Michigan and Director, The CASiRe Consortium

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

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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 SolomonOfori-Acquah, Associate Professor and Director Center for Translational and International Hematology, Vascular Medicine Institute, University of Pittsburgh

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

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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

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 SolomonOfori-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

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Foundation Trust

Neuro-imaging in SCD - Case Studies

17.00 Conference close

Day Two: 6 October 2016

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

08.35-08.50 Abstract - Maria Elena Guerzoni, Paediatric Haematology-Oncology Unit, University Hospital of Modena

Environmental Factors And Acute Events In Sickle Cell Disease (Scd) Patients: A Multicentric Study In Northern Italy

08.50-09.10 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

09.10-09.30 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

09.30-09.50 Dr Meaad K. Hassan, Professor at the Department of Pediatrics, College of Medicine, Basrah University, Basrah, Iraq

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Health-Related Quality of Life (HRQoL) of patients with Thalassemia and Sickle Cell Disease and the impact of these diseases on families

09.50-10.10 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

10.10-10.30 Dr Stephan Lobitz, Department of Pediatric Oncology / Hematology Charité - University Medicine Berlin

Emerging haemoglobinopathies services: the role of digital technology - the German example

10.30-11.00 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

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

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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

11.30-17.00 – 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

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

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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

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

15.45-16.15 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

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19.00-23.00 Conference dinner (by invitation or limited tickets available)

Day Three: 7 October 2016

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

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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

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

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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

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

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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

15.50 – 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

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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

*Redactive Events and GSTT reserve the right to change the programme at anytime