day one: wednesday 5 october 2016...theme: improving patient experience for people living with...

Theme: Improving patient experience for people living with sickle cell disease and thalassaemias

Day One: Wednesday 5 October 2016

08.00-09.00 REGISTRATION

09.00-10.30 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

09.10-09.30 Dr Baba Inusa, Honorary Reader, Paediatric Haematology, Evelina London Children’s Hospital 10th Anniversary: Overview of sickle cell disease - Paediatric perspectives

09.30-10.00 Dr Biree Andemariam, Associate Professor, Hematology/Oncology, Director, New

England Sickle Cell Institute, Director, Connecticut Bleeding Disorders Center, University of

Connecticut, USA

Sickle Cell Disease in the Adult: An overview

10.00-10.30 Professor Sebastian Lucas, Emeritus Professor of Pathology, Guy’s and St Thomas’


Pathological changes in SCD

10.30-10.50 REFRESHMENT BREAK

10.50 -13.15 Session 2 - Parallel sessions

A - Understanding and improving patient experiences: transition, pain, and treatment adherence

10.50-10.55 Chair: Dr Marsha Treadwell, Clinical Scientist, UCSF Benioff Children's Hospital

Oakland and Co-Principal Investigator, Pacific Sickle Cell Regional Collaborative



10.55-11.10 Abstract - Brenda Poku, University of Manchester

An Integrative Narrative Review on the Unique Experiences of Adolescents Living with Sickle Cell

Disease

11.10-11.35 Dr Subarna Chakravorty, Consultant Paediatric Haematologist and Honorary Clini-

cal Senior Lecturer, King’s College Hospital

Understanding the experiences of people living with sickle cell disease- a UK-wide study

11.35-12.00 Dr Marsha Treadwell, Clinical Scientist, UCSF Benioff Children's Hospital

Oakland and Co-Principal Investigator, Pacific Sickle Cell Regional Collaborative

Patient reported outcomes

12.00-12.25 Dr Jerlym Porter, Assistant Member, Department of Psychology, St. Jude

Children’s Research Hospital

Transition skills training

12.25-12.50 Dr Simon Robertson, CEO, kindVR and Co-Investigator, Hematology/Oncology,

UCSF Benioff Children's Hospital Oakland

Using virtual reality as a non-pharmacologic distraction modality to alter the perception of pain

12.50-13.15 Dr Kofi Anie, Consultant Clinical Psychologist, London North West Healthcare NHS

Trust, Haematology and Sickle cell Centre, Central Middlesex Hospital

Treatment Challenges & Adherence: Understanding Patients

B - Chronic organ damage session on the pulmonary, bone, renal and neurologic systems

10.50-10.55 Chair: Dr Andrew Campbell, Assistant Professor, Pediatrics, University of Michigan


10.55-11.10 Asbtract – Name TBC

Overnight auto-adjusting Continuous Airway Pressure compared with Standard Care in the Pre-

vention of morbidity in sickle cell disease: feasibility and safety of a phase II randomised con-

trolled trial


11.10-11.30 Dr Jamie Kawadler, Research Associate, Institute of Child Health, London

Neurological complications and MRI in sickle cell anaemia

11.30-11.55 Dr Claire Sharpe, Reader and Honorary Consultant in Renal Medicine, King’s Col-

lege Hospital

Renal disorders in adult SCD

11.55-12.15 Professor Elizabeth Klings, Associate Professor of Medicine

Director, Center for Excellence in Sickle Cell Disease

Medical Director, Pulmonary Rehabilitation Program, Boston Medical Center

Director of Education and Inpatient Service, Pulmonary Hypertension Center

Boston University School of Medicine

Pulmonary HTN (can include Pulm Complications in SCD)

12.15-12.35 Professor Caterina Minniti, Albert Einstein New York, USA

Managing Chronic Organ Damage in the Clinic Setting

12.35-12.55 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

12.55-13.15 Marcus Bankes, Consultant Orthopaedic Surgeon, Guy's and St Thomas' NHS

Foundation Trust

Avascular necrosis in Sickle Cell Disease

13.15-14.10 LUNCH BREAK

14.10-15.00 Session 3 - Parallel sessions

A - Basic and Translational Research in Sickle Cell Disease - US Centers of Excellence in Hemoglobinopathy Research


14.10-14.15 Chair: Professor Solomon Ofori-Acquah, Associate Professor of Medicine and Hu-man Genetics, School of Medicine and Graduate School of Public Health and Director Center for Translational and International Hematology Heart, Lung, Blood and Vascular Medi-cine Institute Welcome and introduction 14.15-14.45 Dr Kenneth Ataga, Professor of Medicine, Director, UNC Comprehensive Sickle Cell Program, University of North Carolina at Chapel Hill Endothelial Dysfunction and Albuminuria in Sickle Cell Disease 14.45-15.00 Asbtract - Martin Safo, Virginia Commonwealth University Anti-sickling Properties of a Novel Structurally-Enhanced Class of Allosteric Hemoglobin Effectors B - Neuro-imaging Diagnostic and case studies 14.10-14.15 Chair: Professor Fenella Kirkham, Professor of Paediatric Neurology, Institute of Child Health, London Welcome and introduction 14.15-14.30 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 14.30-15.00 Professor Michael Dowling, Associate Professor of Pediatrics and Neurology and Neurotherapeutics, University of Texas Southwestern Medical Center at Dallas, Children's Medical Center Dallas Stroke in sickle cell disease - other causes beyond sickle cell phenomenon 15.00-15.20 REFRESHMENT BREAK

15.20-16.25 Session 3 - Parallel sessions continued

A - Basic and Translational Research in Sickle Cell Disease - US Centers of Excellence in Hemoglobinopathy Research

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 15.45-16.00 Asbtract - Siana Nkya, MUHAS Detailed investigation of genetic determinants of fetal haemoglobin in individuals with sickle cell disease in Tanzania 16.00-16.25 Professor Solomon Ofori-Acquah, Associate Professor of Medicine and Human Ge-netics, School of Medicine and Graduate School of Public Health and Director Center for Translational and International Hematology Heart, Lung, Blood and Vascular Medi-cine Institute Role of the Nrf2 cytoprotective transcription factor in progression of sickle cell disease with aging


B - Neuro-imaging Diagnostic and case studies

15.20-15.35 Asbtract – Name TBC Nocturnal Desaturation and Proteinuria in Children with Sickle Cell Disease 15.35-16.05 Dr Soundrie Padayachee, Consultant Clinical Scientist, Ultrasonic Angiology, Guy’s and St Thomas’ NHS Foundation Trust The Role of Transcranial Doppler in Sickle Cell Disease 16.05-16.35 Dr Ata Siddiqui, Paediatric Neuro-radiologist, Guy’s and St Thomas NHS Foundation Trust Neuro-imaging in SCD - Case Studies 16.35 Discussion

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

08.30-08.40 Chair: Dr Raffaella Colombatti, Clinic of Pediatric Hematology Oncology, Azienda Ospedaliera-University of Padova Welcome and introduction 08.40-08.55 Asbtract - Maria Elena Guerzoni, UOC Onco-Ematologia Pediatrica, Azienda Ospedaliero Universitaria Policlinico di Modena Environmental Factors And Acute Events In Sickle Cell Disease (Scd) Patients: A Multicentric Study In Northern Italy 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

09.15-09.35 Dr Miguel Abboud, Department of Pediatric Hematology and Oncology, American

University of Beirut

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

Health-Related Quality of Life (HRQoL) of patients with TM and SCD and the impact of these

diseases on families (Iraq)

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 - 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

08.30-08.40 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 and Jelili Ojodu, Director, Newborn Screening

and Genetics, Association of Public Health Laboratories


08.40-08.55 Asbtract - 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

08.55-09.15 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

National Development of SCD Programmes in Congo DR

09.35-09.55 Professor Ambroise Wonkam, Senior Consultant Medical Geneticist / Professor,

Division of Human Genetics, Faculty of Health Sciences University of Cape Town

Perspectives in Genetics and Secondary Prevention and Therapy of SCD

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 Professor 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


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


11.35-12.05 Dr Aileen Marshall, Consultant Hepatologist, Royal Free Hospital NHS Trust

Hepatocellular Carcinoma: An Emerging Problem in Thalassemia

12.05-13.35 Dr Frederic Piel, Lecturer in Epidemiology, Imperial College London

Changing epidemiology in inherited disorders

12.35-13.05 Dr Antonis Kattamis, Associate Professor of Pediatric Hematology-Oncology,

University of Athens

Changing patterns of morbidity and mortality in TDT

13.05-13.35 Dr Vip Viprakasit, Professor in Pediatrics, Department of Paediatrics and

Thalassaemia Centre, Siriraj Hospital, Mahidol University, Thailand

Alpha thalassaemias and Hb E / Beta Thalassaemia - clinical course and disease modifiers

13.35-14.30 - LUNCH


14.30-15.00 Professor Marina Cavazzana, Professor of Hematology, Head of Biotherapy

Department, Necker Hospital

Gene therapy

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 NTDT

16.15-16.45 Professor John Porter, Professor of Haematology and Consultant Haematologist,

University College Hospital

Future perspectives in the management of TDT and NTDT

16.45-17.00 Short talk - Caron Lawson and Melinda Edwards, Evelina London Engagement

Involving young people

17.00-19.00 Poster walk and drinks reception

19.00-23.00 Conference dinner (by invitation only)


Day Three: 7 October 2016

08.00-08.30 – REGISTRATION

08.30-11.30 Session 1 - Parallel sessions

A – Genetics and genomics for haemoglobinopathies

08.30-08.35 Chair: Dr Stephan Menzel, Non-clinical Senior Lecturer, King's College London Welcome and introduction

08.35-08.50 Asbtract - Amy Geard, University of Cape Town Association of Variants in APOL1, MYH9 and HMOX1 with Micro-Albuminuria among Sickle Cell Disease Patients from Cameroon 08.50-09.15 Dr Barnaby Clark, Haematology Department, King’s College Hospital Application of Next Generation Sequencing to Haemoglobinopathy Diagnosis 09.15-09.45 Professor Mohamed Cherif Rahimy, Comprehensive Sickle Cell Centre, Benin Republic Population genetics and epidemiology of sickle

09.45-10.15 Professor David Roberts, Nuffield Division of Clinical Laboratory Sciences, Oxford University Genome and exome sequencing

10.15-10.45 Elizabeth Traxler, Department of Hematology, St. Jude Children’s Research

Hospital

Genome editing recreates hereditary persistence of fetal haemoglobin

10.45-11.15 Professor Dagan Wells, Associate Professor at the University of Oxford / Director

at Reprogenetics UK

New technique of karyomapping for PGD


11.30 – 12.00 – REFRESHMENT BREAK


B – Haemoglobinopathy morphology and clinical case scenarios

09.00-09.05 Chair: Dr Rachel Kesse-Adu, Consultant Haematologist, Guy's and St Thomas' NHS

Foundation Trust


09.05-09.40 Dr Vishal Jayakar, Consultant Clinical Haematology, Kingston Hospital NHS

Foundation Trust

Red Cell Morphology and Quiz

09.40-10.10 Dr Chris Lambert, Service Delivery Manager – Haematology, Haematology

Department, King’s College Hospital

Laboratory diagnosis of Haemoglobinopathies (with HPLC cases)

10.10-10.40 Dr Emma Drasar, Consultant Haematologist, Whittington Hospital NHS

Thalassaemia case scenarios

10.40-11.10 Dr Rachel Kesse-Adu, Consultant Haematologist, Guy's and St Thomas' NHS

Foundation Trust

Sickle Case Studies

11.10-11.40 Dr Banu Kaya, Consultant Haematologist, Department of Paediatric Haematology

and Oncology, Royal London Hospital, Barts Health NHS

Paediatric haemoglobinopathy case studies

11.40 – 12.00 – REFRESHMENTS

12.00-13.00: Session 2 - Patient voice

12.00-12.10 Chair: John James, Chief Executive, Sickle Cell Society



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


13.00-14.00 – LUNCH

14.00-16.30: 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, Memphis

Brief overview and update on hydroxyurea and organ function

14.30-15.00 Professor Matt Heeney, Dana-Farber/Boston Children’s Cancer and Blood

Disorders Center Associate Chief, Hematology Director, Sickle Cell Program, Boston

Anti-adhesion agents such as Prasugrel, Selexys and Rivipansel

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

15.00 – 15.20 – REFRESHMENT BREAK

15.20 – 16.30 – PARALLEL SESSIONS CONTINUED

A - New drug therapies

15.20-15.50 Professor Greg Kato, Professor of Medicine, Department of Medicine, Division of

Hematology-Oncology Heart, Lung, Blood and Vascular Medicine Institute, University of

Pittsburgh

Augmenting Nitric Oxide Signaling in SCD

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 GBT440 and Haemoglobin modifiers

16.20-16.35 Asbtract - Dr Baba Inusa, Evelina Children’s Hospital, and Guy's and St Thomas'


Geographic Differences in Phenotype and Treatment of Children with Sickle Cell Anemia from the Multinational DOVE Study

B - Nursing issues in haemoglobinopathies (

15.20-15.35 Asbtract - 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

15.35-16.00 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


16.00-16.20 Kemi Ajamufua, Specialist Nurse Team Leader, Guy's and St Thomas' NHS

Foundation Trust

Case Study (Community)


16.30 - Conferences close

day one: wednesday 5 october 2016...theme: improving patient experience for people living with...

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