6th Annual Sickle Cell and Thalassaemia: Advanced Conference

24 - 27th September, 2012

Robens Suite

Guy’s Hospital London SE1 9RT

UK

Overview

In the UK about 12,500 people have Sickle Cell Disease (SCD) and it is now one of the most common inherited conditions in babies born in the UK. The 6th Annual Sickle Cell and Thalassaemia: Advanced Conference will take place this year on 24-27 September 2012 at Guy’s Hospital, London, SE1 9RT. Who should attend? This four-day conference is aimed at all those with a common interest in sickle cell and thalassaemia, including Specialist Registrars, Consultant Haematologists, Paediatricians and Clinical Nurse Specialists. This conference is intended to update those who are working with patients across the world with SCD, to consider the most efficient and safe way to manage these vulnerable patients.

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Overview of programme This programme will provide participants with an overview of the key issues in sickle cell disease including a look at the pathology of SCD, diagnostic testing, the impact of environmental factors and genetic modifiers on disease severity, managing acute and chronic sickle cell crises, and dealing with major complications in patients including stroke, renal, liver and cardiac problems and the treatment options available. It will discuss how to manage the transition from paediatric to adult-hood, preventing morbidity and mortality and the latest research in SCD. Finally it will cover thalassaemia issues and common management issues for SCD, Thal-Chelation therapy and Stem cell transplantation. Format This course combines interactive lectures, case studies, examples of good practice, group work, Q & A sessions.

Programme - day one

Monday 24thSeptember 2012 SICKLE CELL DISEASE – GENERAL PERSPECTIVES CHAIR: Dr Jo Howard, Guy’s and St Thomas’, UK Setting the agenda: a summary of the issues in haemoglobinopathies Professor Miguel Abboud, American University of Beirut, Lebanon Severe Sickle Cell Disease – pathophysiology and therapy Dr Moji Awogbade, King’s College Hospital, UK Pre-implantation genetic diagnosis in haemoglobinopathies Dr Genevieve Say, Guy’s and St Thomas’, UK

Pathological features of sickle cell disease Professor Sebastian Lucas, King’s College London and Guy’s and St Thomas’, UK Pulmonary hypertension in children with sickle cell disease Dr Andrew Campbell, University of Michigan, USA LUNG DISORDERS IN SICKLE CELL DISEASE CHAIR: Dr Atul Gupta, Evelina Children’s Hospital, Guy’s and St Thomas’, UK Acute and chronic lung disorder in SCD: an evolving phenomenon? Professor Michael R Debaun, Vanderbilt University, USA SCD respiratory management: developing an algorithm of management Dr John Warner, St Mary’s Hospital, UK CHAIR: Dr Keith Pohl, Evelina Children’s Hospital, Guy’s and St Thomas’, UK Implication of low oxygen saturation in SCD - CNS effects Professor Fenella Kirkham, Institute of Child Health and Southampton Hospital, UK Common update on neuroimaging studies in SCD Dr Nomazulu Dlamini and Dr Ata Siddiqui, Evelina Children’s Hospital, Guy’s and St Thomas’, UK Orthopaedic issues in SCD Mr Marcus Bankes, Guy’s and St Thomas’, UK

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Programme - day two

Tuesday 25thSeptember 2012 THALASSAEMIA CHAIR: Dr Paul Telfer, Royal London and St Bart’s Hospital, UK Thalassaemia: endocrine and metabolic bone disorders Dr Ratna Chatterjee, University College London and University College Hospital, UK Thalassaemia: major, common emergencies Dr Bernard Davis, Whittington Hospital and University College Hospital, UK

Laboratory diagnostic in haemoglobinopathies - choosing algorithms Dr Yvonne Daniel, Guy’s and St Thomas’, UK Thalassaemia intermedia - balancing management Dr Anne Yardumian, North Middlesex Hospital, UK Combination therapy of management of iron overload in Thalassaemia Dr Farrukh Shah, Wittington Hospital and University College Hospital, UK

GLOBAL PERSPECTIVE AND EMERGING THEMES CHAIR: Dr Laura Sainati, University of Padova, Italy Haemoglobinopathies in Europe: the opportunities to influence global research Professor Irene Roberts, Imperial College and St Mary’s Hospital, UK Response to Hydroxyurea in Kuwaiti Sickle Cell Disease Patients Professor Adekunle Adekile, Department of Pediatrics, Kuwait University

The Asthma and pulmonary complications of sickle cell disease: Jamaican / UK Professor Anne Greenough, Head, King's College London School of Medicine; Director of Education and Training, King's Health Partners The case for and against haemoglobin F as a modifier of disease severity in sickle cell disease Professor Michael R Debaun, Vanderbilt University, USA Low prevelance & emerging SCD in Europe: Italian perspectives Dr Raffaella Colombatti, University of Padova, Italy

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Programme - day three

Wednesday 26thSeptember 2012

PSYCHOSOCIAL AND PUBLIC HEALTH PERSPECTIVES IN HAEMOGLOBINOPATHIES CHAIR: Professor Simon Dyson, De Montfort University, UK Cultural variations in concepts of health and illness Dr Kofi Anie, Central Middlesex Hospital, UK Models for counselling services for haemoglobinopathies: developing a model for resource poor setting Dr Marsha Treadwell, Children’s Hospital Oakland Research Institute, USA Quality of life: children with SCD. What additional input can we get from a health professional viewpoint? Chair: Dr Baba Inusa, Evelina Children’s Hospital, Guy’s and St Thomas’, UK

TRANSITION: PRACTICE FROM PAEDIATRICS TO ADULTS CHAIR: Dr Melinda Edwards, Evelina Children’s Hospital, Guy’s and St Thomas’, UK Case Studies Dr Anicee Danee, Evelina Children’s Hospital, Guy’s and St Thomas’, UK Patient Passport Luhanga Musumadi, Guy’s and St Thomas’, UK Medical Home Dr Marsha Treadwell, Children’s Hospital Oakland Research Institute, USA

CHAIR: Mrs Bola Ojo, Sickle Cell Research (SCORE), Nigeria Haemoglobinopathies: public health agenda and social, economic and healthcare implications Dr Althea Grant, Centers for Disease Control and Prevention, USA Monitoring morbidity, mortality and healthcare utilization from SCD in the US: preliminary findings, challenges and next steps for the RuSH project. Mary Hulihan, Centers for for Disease Control and Prevention, USA Newborn outcome: clinical and governance issues Dr Elizabeth Dormandy and Dr Allison Streetly National Sickle Cell and Thalassaemia Screening Committee, UK NETWORKING RECEPTION Wednesday 26th September 2012, 5pm to 6pm

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Programme - day four

Thursday 27thSeptember 2012 CHAIR: Dr Jo Howard, Guy’s and St Thomas’, UK Blood transfusion as a management strategy for Haemoglobinopathy Dr Corrina McMahon, Our Lady’s Hospital, Dublin, Ireland

Obstetrics issues in sickle cell and thalassaemia Dr Eugene Oteng-Ntim, Guy’s and St Thomas’, UK

POSTER SESSION CHAIR: Dr Caroline Booth, Evelina Children’s Hospital, Guy’s and St Thomas’, UK Vitamin D deficiency: pathophysioology and management strategy Professor Peter Selby, Manchester Royal Infirmary, UK Renal disease in adults with sickle cell disease Dr Claire Sharpe, King’s College London and King’s College Hospital, UK

CHAIR: Dr David Rees, King’s College London and King’s College Hospital, UK Assessment of iron overload and its management Professor John Porter, University College Hospital, UK

Bone marrow transplantation for haemoglobinopathies Dr Josu de la Fuente, St Mary’s Hospital & Imperial College, UK Cardiac disorders in haemoglobinopathies Professor Simon Gibbs, Imperial College & Hammersmith Hospital, UK

Vote of thanks and conference close Dr Baba Inusa, Evelina Children’s Hospital, Guy’s and St Thomas’, UK

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Course director and faculty

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Dr Baba Inusa

Course Director: Consultant Paediatrician, Evelina Children’s Hospital, Guy’s and St Thomas’, UK

Dr Inusa completed his general paediatric training, along with further

training in haematology at the Hammersmith Hospital, London and Guy’s and Kings College Hospitals, London. He has been a Consultant for the last 16 years combining roles as a paediatrician with specialist responsibility for sickle cell and thalassaemia.

Professor Michael R DeBaun Professor and Chair of the Department of Paediatrics and Director of the Vanderbilt - Meharry Center for Excellence in Sickle Cell Disease, Vanderbilt University, School of Medicine, USA

Dr Marsha Treadwell

Clinical Psychologist, Children’s Hospital Oakland Research Institute, USA

Professor Irene Roberts

Paediatric Haematology, Department of Medicine, St Mary’s Hospital London, UK

Professor John Porter

Professor of Haematology and Consultant Haematologist, University College London Hospitals, UK

Course director and faculty

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Dr Althea Grant

Chief of the Epidemiology and Surveillance Branch, Division of Blood Disorders, National Centre on Birth Defects and Developmental Disabilities, USA Dr Farrukh Shah

Consultant Haematologist, Wittington Hospital and University College Hospital, UK

Faculty

SPEAKERS Dr Moji Awogbade King’s College Hospital, UK Professor Miguel Abboud American University of Beirut, Lebanon Dr Kofi Anie Central Middlesex Hospital, UK Mr Marcus Bankes Guy’s and St Thomas’, UK Dr Andrew Campbell University of Michigan, USA Dr Ratna Chatterjee University College London and University College Hospital , UK Dr Raffaella Colombatti University of Padova Italy Dr Anicee Danee, Evelina Children’s Hospital, Guy’s and St Thomas’, UK Dr Yvonne Daniel Guy’s and St Thomas’, UK Dr Bernard Davis Whittington Hospital and University College Hospital , UK Professor M R Debaun Vanderbilt University, Nashville, USA Drs Nomazulu Dlamini Evelina Children’s Hospital, Guy’s and St Thomas’, UK

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SPEAKERS Dr Elizabeth Dormandy National Sickle Cell and Thalassaemia Screening Committee, UK Dr Josu de la Fuente St Mary’s & Imperial College, UK Dr Althea Grant National Centre on Birth Defects and Developmental Disabilities, USA Professor Anne Greenough King's College London School of Medicine; King's Health Partners, UK Professor Simon Gibbs Imperial College & Hammersmith, UK Mary Hulihan National Centre on Birth Defects and Developmental Disabilities, USA Dr Baba Inusa Evelina Children’s Hospital, Guy’s and St Thomas’, UK Professor Fenella Kirkham Imperial College London and Southampton Hospital, UK Professor Sebastian Lucas King’s College London and Guy’s and St Thomas’, UK Dr Corrina McMahon Our Lady’s Hospital, Dublin, Ireland Luhanga Musumadi Guy’s and St Thomas’, UK

SPEAKERS Dr Eugene Oteng-Ntim Guy’s and St Thomas’, UK Professor John Porter University College Hospital UK Professor Irene Roberts Imperial College, St Mary’s Hospital, London Dr Genevieve Say Guy’s and St Thomas’, UK Professor Peter Selby Manchester Royal Infirmary UK Dr Claire Sharpe Kings College London and King’s College Hospital, UK Dr Farrukh Shah Wittington Hospital and University College Hospital UK Dr Ata Siddiqui Evelina Children’s Hospital, Guy’s and St Thomas’, UK Dr Allison Streetly National Sickle Cell and Thalassaemia Screening Committee, UK Dr Marsha Treadwell Children’s Hospital Oakland Research Institute, USA Dr John Warner St Mary’s Hospital, UK Dr Anne Yardumian North Middlesex Hospital, UK

CHAIR Dr Caroline Booth Evelina Children’s Hospital, Guy’s and St Thomas’, UK Professor Simon Dyson De Montfort University, Leicester, UK Dr Melinda Edwards Evelina Children’s Hospital, Guy’s and St Thomas’, UK Dr Atul Gupta Evelina Children’s Hospital, Guy’s and St Thomas’, UK Dr Jo Howard Guy’s and St Thomas’, UK Mrs Bola Ojo Sickle Cell Cohort Research (SCORE) Dr Keith Pohl Evelina Children’s Hospital, Guy’s and St Thomas’, UK Dr David Rees Kings College London and King’s College Hospital, UK Dr Laura Sainati University of Padova Italy Dr Paul Telfer Royal London and St Bart’s Hospital, UK

Booking and contact details

For all information, including the latest programme and how to book, please visit: www.guysandstthomasevents.co.uk To book by CHEQUE please fill out a booking form along with payment and send to: Guys and St Thomas‘ Events Redactive Media Group 17 Britton Street Farringdon London EC1M 5TP For further information on Haemophilia Networks please visit the South Thames Sickle Cell and Thalassaemia Network website for course information: www.ststn.co.uk/events For all other enquiries, booking forms and information on abstracts and bursaries, please contact: Ian Mackie Events Organiser Guy’s Hospital London SE1 9RT email: ian.mackie@gstt.nhs.uk telephone: +44 (0) 20 7188 1622

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