Annual Sickle Cell Disease and Thalassaemia Conference (ASCAT) 2018
The 2018 Annual Sickle Cell Disease and Thalassaemia (ASCAT) Conference will be held in London on 22-24 October.
The Annual Sickle Cell and Thalassaemia Conference will be held at:
etc. Venues Westminster Bridge – County Hall
Pictures of the 2017 event can be found below:
The Annual Scientific Conference on Sickle Cell and Thalassaemia is one of the must attend events of the year for consultants and specialist psychologists, nurses, scientists and all relevant experts. The event is an ideal opportunity to learn about the latest advances in diagnosis, treatment and emerging fields in haemoglobinopathies. It is an opportunity to interact on the latest advances in clinical care, transition services and emerging new therapies including updates for curative treatment options. Furthermore, you will have the opportunity to show case your work through abstracts (oral and posters) and to network with leading and cutting edge practitioners.
This year’s theme is ‘Sickle Cell Disease and Thalassaemia: Bridging the Gap in Care and Research in order to improve outcomes for patients living with the disorders’. The meeting will highlight key basic science, clinical and translation research in haemoglobinopathies including the mechanisms of chronic complications and end organ damage. Attendees will improve understanding of the impact of the disorders on patients, families and communities, and will gain current knowledge to transform and strengthen health systems to benefit the individual patients, to avail them with current and new therapies- new drugs; curative therapies. – an update on i) genetic research and gene therapy and ii) improvement in safety and access to bone marrow transplantation.
ASCAT will include lectures and networking opportunities to improve understanding of the health outcomes and health care system utilisation patterns of people with SCD, to increase evidence for public health programs, and to establish cost-effective practices to improve and extend the lives of people with SCD.
- World-renowned experts in the field of Sickle Cell and Thalassaemia
- Abstract presentations and poster presentation for early stage and established researchers
- Webinars for prime-time lectures and debate
- 20 CPD/CME points
- Networking opportunities with more than 200 professionals
This three day conference is aimed at all those with a common interest in sickle cell and thalassaemia, including:
- Consultant haematologists
- Fellows and trainees in all related fields
- There will be patient led sessions and opportunity for interactions
20 CPD/CME points have been accredited from the Royal College of Paediatrics and Child Health and the Royal College Pathologists.
3 days attendance £490 (Early Bird) £590 (Normal fee)
1 day attendance £199 (Early Bird) £225 (Normal fee)
3 days attendance £399 (Early Bird) £475 (Normal fee)
1 day attendance £ 149 (Early Bird) £199 (Normal fee)
MEDICAL / NURSING STUDENTS
3 days attendance £180 (Early Bird) £225 (Normal fee)
1 day attendance £85 (Early Bird) £99 (Normal fee)
**Early bird has now ended**
Please note, delegates from low income countries may be eligible for a discount. Please email email@example.com for further information
The abstract submission process is your opportunity to help shape the content, to share your work with your peers and raise your professional profile.
2018 categories include:
- Basic sciences-pathology and pathophysiology
- Newborn screening; community engagement
- Clinical and community implementation research
- Public Health and Health Education
- Psychology, education and quality of life
- Ageing and haemoglobinopathies
- Other aspects of haemaoglobinopathies
Entry deadline for abstracts is 11 August 2018.
To download the entry form and submit your abstract please click here
Dr. Baba Inusa, UK (chair and conference director), Paediatric Haematology, Evelina London Children’s Hospital, Guy’s and St Thomas’ NHS Foundation Trust
Dr. Biree Andemariam, USA, Associate Professor, Hematology/Oncology, Director, New England Sickle Cell Institute, Director, Connecticut Bleeding Disorders Center, University of Connecticut, USA
Dr. Andrew Campbell, USA, Haematology, Director, Comprehensive Pediatric Sickle Cell Disease Program, Children’s National Medical Center, George WashingtonUniversity School of Medicine, Washington, DC, USA
Dr. Raffaella Colombatti, Italy, Azienda Ospedaliera – University of Padova, Italy
Dr. Rachel Kesse-Adu, UK, Haematology, Guy’s and St Thomas NHS Trust
Dr. Marsha Treadwell, USA, Northern California Network of Care for Sickle Cell Disease, UCSF Benio Children’s Hospital Oakland, USA
Dr. Miguel Abboud, Lebanon, Department of Pediatrics and Adolescent Medicine, American University of Beirut – Medical Center, Children’s Cancer Center of Lebanon, Beirut, Lebanon
Miguel R. Abboud earned his medical degree at the American University of Beirut in Lebanon in 1982. In 1984, he completed his residency in the Department of Pediatrics, also at the American University of Beirut. He was a Fellow in the Department of Pediatrics at the Memorial Sloan-Kettering Cancer Center and The New York Hospital , Cornell University Medical Center, New York, NY, USA, from 1984 to 1987. Starting as an Assistant Professor in 1989, he was appointed Professor of Pediatrics at the Medical University of South Carolina in Charleston in 2001.
At MUSC, Dr. Abboud’s research focused on sickle cell disease. He authored a number of studies on this disease and was an original member of the steering committees for the STOP I and STOP II trials. He also worked extensively on the pathophysiology of the disease and the development of new modalities of therapy such as hematopoietic stem cell transplant.
Dr. Ofakunrin Akinyemi, Nigeria, Consultant Paediatrician, Jos University Teaching Hospital
Dr Ofakunrin Akinyemi is a Consultant Paediatrician with the Jos University Teaching Hospital and a Lecturer at the University of Jos, Nigeria. He earned his Bachelor of Medicine, Bachelor of Surgery degree in 2004 at the College of Medicine, University of Ilorin, Nigeria where he obtained a Distinction grade in Pathology and received the prize for the best student in Haematology. He is a fellow of the National Postgraduate Medical College of Nigeria and he is currently rounding up his Master’s degree studies in Clinical Epidemiology at the University of Jos.
His research interest is in Sickle cell disease therapy. He has participated in a number of international studies as a Research Physician and he is currently a seed award recipient from the Fogarty International Center of the National Institute of Health (NIH), USA. He is optimistic that a ‘safe’ cure for sickle cell disease will soon be discovered.
Dr. Kofi A. Anie, UK, Consultant Psychologist & Honorary Clinical Senior Lecturer, London North West University Healthcare NHS Trust & Imperical College London
Dr Kofi A. Anie is the Psychology Service Lead for children and adults with sickle cell disease and thalassaemia at London North West University Healthcare NHS Trust, and an Honorary Clinical Senior Lecturer at Imperial College London. He trained at the University of Surrey and University of London, and began his professional career at King’s College Hospital, London where he pioneered psychological interventions for children with sickle cell disease. He was later a Research Fellow at St George’s University of London, and was appointed to his current position in 1998. He is a Fellow of the Royal Society of Medicine and Associate Fellow of the British Psychological Society; his other professional affiliations include the British Association of Behavioural and Cognitive Psychotherapies, and American Psychological Association.
Nkechi Anywanwu, UK, Service Manager and Clinical Lead for South East London Community Sickle & Thalassaemia, Guy’s & St Thomas
I joined Guy’s & St Thomas’ in August 2012, as the Service Manager and Clinical Lead (Haemoglobinopathies) for South East London Community Sickle Cell & Thalassaemia services covering the boroughs of Lambeth, Southwark, Lewisham and we currently provide genetic counselling service for Greenwich & Bexley antenatal women booked at Queen Elizabeth hospital (Woolwich).
My role is to provide strong professional and clinical leadership to a team of skilled specialist nurses. I have a wide range of experiences in the field of haemoglobinopathies; I have worked with children, young adults, adults, families and carers with Sickle Cell and thalassaemia disease since 1998.
My previous roles as a trained general nurse and midwife, has given me the foundation to build on my wealth of knowledge, working within this client group.
I am currently the Vice chair for the Sickle Cell and Thalassaemia Association of Nurses, Midwives and Allied Professionals (STANMAP) and the co-lead for Nursing in the South Thames Sickle Cell & Thalassaemia Network.
My vision is to continue to raise the awareness of haemoglobinopathies among the local community.
Dr. Wale Atoyebi, UK, Consultant Haematologist, Oxford University Hospitals NHS Foundation Trust, Oxford
Dr Wale Atoyebi is a Consultant Haematologist and lead for Red cell disorders at the Oxford University Hospitals NHS Foundation Trust, Oxford, a post held since 2001 and is an honorary senior clinical lecturer at Oxford University. Trained in medicine in Nigeria, he underwent his haematology training in Oxford. His main interests are haemoglobinopathies and disorders of iron metabolism including diagnostics utilising next generation sequencing. He is member of the NHS England, Clinical
Reference Group for Haemoglobinopathies and on the editorial board of the 2018 Standards for the Clinical Care of Adults with Sickle Cell Disease in the UK. He is also involved in collaborative research focused on strengthening healthcare systems by improving best practice in the diagnostics and management of sickle cell disease in Sub-Saharan Africa.
Dr. Mohsin Bahat, UK, Weatherall Institute of Molecular Medicine
I am a Haematology registrar taking time out from training on the Barts rotation in North-East London to undertake basic scientific research in the laboratory of Professor Doug Higgs at the Weatherall Institute of Molecular Medicine. I hope to find ways to ameliorate the anaemia in beta thalassaemia using genome-engineering techniques. I graduated from the University of Cambridge and trained as a paediatrician in North-East London prior to my current role.
Hatel Bhatt, UK, Counselling Psychologist, Evelina Children’s Hospital
Hatel Bhatt is a Counselling Psychologist in the Paediatric Sickle Cell team at the Evelina Children’s Hospital. She is passionate about supporting children and young people who have a diagnosis of Sickle Cell. Within her psychology role, she offers neuropsychology assessments and individual and family therapy sessions. In addition to this, she also facilitates liaison and teaching to schools and other professionals. Hatel has a special interest in working with schools and other professionals supporting children in the community, with the aim to help provide holistic care for patients and raise the awareness of sickle cell and Thalassemia. She is also keen to explore the cultural differences in families’ understanding of their child’s diagnosis, and experiences of using psychological therapies to help with the management of pain. Prior to this role, for the past 6 years, Hatel has worked in a number of child and adolescent mental health services (CAMHS) across London.
Bart J. Biemond, Netherlands, internist-haematologist, MD, PhD, Academic Medical Centre of Amsterdam (AMC), University of Amsterdam, The Netherlands
Bart Biemond is working in the Academic Medical Centre as senior staff member of the Department of Hematology and responsible for general hematological care (both benign and malignant haematology).
His focus of research and clinical expertise is sickle cell disease and thalassemia is head of the Sickle Cell/Thalassemia Expert Centre for adult patients. He has focused on clinical and pre-clinical studies on vasculopathy in SCD. Furthermore, he is member of the Dutch Haemoglobinopathy Working Group consisting of hematologists, pediatricians, laboratory specialist and specialized nurses and is medical advisor of the Dutch patient foundation for sickle cell disease and thalassemia (Oscar).
Fedele Bonifazi, Italy, Foundation Vice-President and Head of the IT & Research laboratory, Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus
Fedele’s current role is H2020-JTI-IMI2 conect4children (COllaborative Network for European Clinical Trials For Children), WP5 “Data coordinating centre and data quality standards” co-lead
Person in charge for HTA-Thal, the Italian multiregional Thalassemia registry, collecting and storing clinical, economic and epidemiological data from ~2,000 Haemoglobinopathies patients in Italy;
Member of the HTA Working Group in the Apulia Region Health Agency and Expert for the Health Department of the Basilicata Region.
Dr. Pierre Buffet, France, physician and clinical investigator
Pierre Buffet has been working on the interaction between red blood cells and the spleen for two decades. As a physician, clinical investigator he initially focused his research on tropical diseases. He then explored human physiology and the pathogenesis of red blood cell diseases. He has set-up the ex-vivo perfusion of human spleens, developed biomimetic experimental tools to analyze the mechanical sensing of red blood cells by the spleen, and explored how the human spleen controls the quality of red blood cells with a focus on unique mechanical challenges exerted by splenic microcirculatory structures. He has also studied the spleen-specific “pitting” process whereby undeformable bodies like dead parasites are expelled from red blood cells without hemolysis. This work showed that pitting of parasitized red bood cells is involved in frequent post-treatment anemia. He has recently identified and validated a simple method to predict this complication and proposed pathophysiological hypotheses in the field of sickle cell disease. Current projects explore transmission-blocking approaches in malaria, the natural protection against malaria in different ethnic groups in Africa, and alterations of red cells upon storage before transfusion
Dr. Maria Cappellini, Italy, Professor of Internal Medicine, University of Milan
Maria Domenica Cappellini is Professor of Internal Medicine at the University of Milan and Chief of the Rare Diseases Centre at the Fondazione IRCCS Policlinico Hospital, Milan. She qualified as an MD in 1974 at the University of Milan, Italy and has been active in the fields of thalassaemia, haemoglobinopathies, and the haem biosynthetic pathway for over 40 years.
She is a member of the European Gaucher Registry. Prof. Cappellini has been an active researcher in the field of rare diseases, including thalassaemia, haemoglobinopathies, porphyrias and lysosomal diseases (mainly Gaucher and Fabry) for over 20 years. She has focused on the phenotypic expression of thalassaemia intermedia and identified the mechanisms underlying the thrombotic risks associated with the disease. She is involved in clinical trials of new iron chelators and has focused recent studies on iron dysregulation in Gaucher disease.
Dr. Subarna Chakravorty, UK, Paediatric Haematologist, King’s College Hospital
Dr Subarna Chakravorty is a Paediatric Haematologist with a special interest in red cell disorders. She joined King’s College Hospital in July 2015. Prior to that, Subarna led the Paediatric Haemoglobinopathy service at Imperial College Healthcare NHS Trust and the Imperial Paediatric Red Cell Disorders Network for 5 years, where she was also involved in the bone marrow transplant programme for paediatrics.
Subarna was the Paediatric deputy lead for the National Haemoglobinopathy Peer Review Programme in 2015-2016 and was appointed in 2018 to lead the next national programme of Haemoglobinopathy Peer Reviews. She also led the ‘Sickle Cell Theme’ of the ‘Collaboration for Leadership in Applied Health Research and Care’ (CLAHRC) in North West London from 2014-2016. She is currently the joint Paediatric lead for the South Thames Sickle and Thalassaemia Network and chairs the London Haemoglobinopathies Group.
Bessie Cipriano, UK, Senior Paediatric Research Nurse, Barts Health NHS Trust
Bessie has been a Paediatric nurse for 16 years working with children and their families. Her clinical experience lies within General Medicine, Paediatric Accident & Emergency and Trauma & Orthopaedics which included the rehabilitation of children following acute head injury and major trauma. She has 6 years’ experience in clinical research and currently works as a Senior Paediatric Research Nurse at Barts Health NHS Trust to manage a portfolio of National Institute of Health Research (NIHR) studies and care pathways for patients and families on clinical studies.
She is currently undertaking a Master of Research in Clinical Research (MRes(Clin)) at St.George’s University, London
Cathy Coppinger, UK, Programme Manager, NHS Sickle Cell & Thalassaemia screening programme, Public Health England.
The NHS Sickle Cell and Thalassaemia (SCT) Screening Programme aims are to:
- offer timely antenatal sickle cell and thalassaemia screening to all women (and couples) to facilitate informed decision-making
- achieve the lowest possible childhood death rate and to minimise childhood morbidity from sickle cell disease
The success of newborn sickle cell and thalassaemia (SCT) screening depends on identifying babies affected by these conditions early and promptly transitioning them into clinical care.
An evaluation of the national SCT programme, published in November 2017, showed that screening was effective in detecting affected babies but that there was scope for improvement. The evaluation report identified a number of ongoing challenges, including delays between babies’ positive screening results and enrolment into care.
That was one of the main driving forces behind our development of a new IT system for referring infants that screen positive into treatment and the collection of SCT newborn outcomes data.
Cathy will present the new IT system and the Agile service design process used to build the system.
Dr. Deepika Darbari, USA, Attending Physician, Division of Hematology and Associate Professor of Pediatrics, George Washingotn University, Washington D.C.
Dr. Darbari is a Pediatric Hematologist-Oncologist at the Children’s National Medical Center and Associate Professor of Pediatrics at the George Washington University in Washington DC. Sickle cell team at Children’s National provides comprehensive care to one of the largest populations of children and adolescents with sickle cell disease in the United States. Dr. Darbari studies complications of sickle cell disease with emphasis on pain. She has been conducting clinical and translational studies directed to better understanding of sickle cell pain and its management. She has published many peer reviewed papers on the subject. Her work was one of the first in the field showing altered brain connectivity in patients who were frequently hospitalized for pain suggesting possible role of central mechanisms of pain in sickle cell disease.
Prof. Mona El-Ghamrawy, Egypt, MD, Professor of Pediatrics, Faculty of Medicine, Cairo University
Professor of Pediatrics, Faculty of Medicine, Cairo University, Consultant of Pediatric Hematology and currently Director of Pediatric Hematology & BMT unit, New Children Hospital, Cairo University. Board member of the Egyptian Thalassemia Association (ETA) and Member of the European Hematology Association, Egyptian Society of Hematology & Research (ESHR) and Egyptian Pediatric Association. Pediatric Hematology has been my field of practice and focus of research with special interest in sickle cell disease and hemoglobinopathies. Have been running the sickle cell disease Clinic at Pediatric Hematology & BMT Unit, Cairo University for more than ten years. Co-investigator of several multi-center international clinical trials and have authored and co-authored many articles in national and international medical journals. Speaker and chairperson in national and international scientific meetings and conferences.
Dr. Perla Eleftherious, UK, Consultant Haematologist and Honorary Clinical Senior Lecturer, University Hospital, London
Works as a Consultant Haematologist and Honorary Clinical Senior Lecturer at University College Hospital in London. Area of special interest is Red Cell Disorders: haemoglobinopathies and rare anaemias but also polycythaemias and iron overload disorders. Graduated from the University of Giessed, Germany in 2000.
Awarded the MRCP by the Royal College of Physicians in 2008 and the FRCPath from the Royal College of Pathologists in 2013. Completed haematology training as a specialist Registrar at Bartshealth NHS trust and gained vast experience in the broad spectrum of malignant and non-malignant haematology, including laboratory diagnostics. Completed Clinical research fellowship in Professor Porter’s department at UCLH/UCL for 2 and a half years (2004-2007) , studying the effect and tolerability of iron chelators in adult and paediatric patients with haemoglobinopathies and other rare transfusion dependent anaemias and transfusional iron overload.
Developed a special interest in the effect of iron chelators on the myocardial iron removal. Presented posters and oral presentations at various international conferences. In 2006 awarded with a scholarship for young researchers in Haemoglobinopathies by the European School of Genetics. Has extensive experience in clinical trials in Red Cell Hameatology and function as Principal Investigator and Co-Inverstigator in numerous trials in thalassaemia, sickle cell disease and rare anaemias.
Lectures Haematology at the London School of Hygiene and Tropical medicine, UCL and University of Westminster. Coordinator of an international Fellowship funded by TIF ( Thalassaemia International Federation). Serves as clinical scientific advisor of TIF.
Dr. Josu de la Fuente, UK, Director of Paediatric BMT Programme and Senior Lecturer at Imperial College London.
Josu de la Fuente is the Director of the Paediatric BMT Programme and Senior Lecturer at Imperial College London. He is in the steering committee of the BMT CTN 1507 trial and member of the Consensus Panel for both haemoglobinopathies and bone marrow failure of the Second Pediatric Blood and Marrow Transplant Consortium on Late Effects after Pediatric Hematopoietic Cell Transplantation. He completed his general training in paediatrics in different hospitals in London and following membership of the Royal College of Paediatrics and Child Health, he trained in haematology at Imperial College and Great Ormond Street Hospital achieving membership of the Royal College of Pathologists. During this time he developed an interest in red cell disorders, bone marrow failure and transplantation.
Prof. Anne Greenough, UK, Professor of Neonatology and Clinical Respiratory Physiology, Kingls Heath Partners Academic Health Science Centre.
Anne Greenough is Professor of Neonatology and Clinical Respiratory Physiology, Director of Education and Training at King’s Heath Partners Academic Health Science Centre and Board Member of the Higher Education Funding Council for England. She was Chair of the National Institute for Health Research (NIHR) Paediatrics (non medicines) Specialty Group and is now Vice President Science and Research, Royal College of Paediatrics and Child Health.
Professor Greenough is a member of the Department of Women and Children’s Health, School of Life Course Sciences, Faculty of Life Sciences and Medicine, King’s College London and the Medical Research Council–Asthma UK Centre in Allergic Mechanisms of Asthma. Her research interests focus on the early origins of chronic respiratory disease and include factors affecting antenatal lung growth, optimisation of respiratory support, determinants of sudden infant death syndrome and prevention and treatment of chronic lung disease, particularly related to viral infections and sickle cell disease.
Prof. Beatrice Gulbis, Belgium, Medical Director, Departments of Medical Laboratory and Mlecular Biology, Brussels University Hospitals Laboratory
Pr. Béatrice Gulbis is a physician specialized in Laboratory Medicine who has developed a reference laboratory centre for the diagnosis, prevention and follow-up of patients with hereditary red blood cells disorders and in particular, haemoglobinopathies and membrane red blood cells disorders. After completing her graduate medical training at Université Libre de Bruxelles, Belgium in 1984, she has joined the Academic Hospital Erasme in Brussels, Belgium. She has contributed to the implementation of a national network of health professionals on non-oncological red blood cells disorders through the Belgian Hematology Society (www.bhs.be) and is working for more than 10 years for a European network on rare anaemias (www.enerca.org). Her experience has also been based on grants for research projects in Africa i.e. Burkina Faso and Democratic Republic of Congo. She has published a number of peer-reviewed papers on SCD and supervised thesis work on the subject. She is a professor at the medical school and provides training courses in haematology. Being the Head of the department of Clinical Chemistry, she became the Head of the Departments of Medical Laboratory and Molecular Genetics. She has recently accepted to become the Medical Director of the Departments of Medical Laboratory and Molecular Biology for five University Hospitals in Brussels.
Dr. Kaplna Gupta, USA, Professor of Medicine, Department of Medicine, and Co-Leader, Molecular and Cellular Engineering Program at The Institute for Engineering in Medicine, University of Minnesota Medical School, Minneapolis.
Dr Kalpna Gupta has led pioneering work in understanding the mechanisms of pain in sickle cell disease. These insights will help us treat both pain and the underlying disease process causing pain in the first place. Her laboratory has identified several new targets at the intersection of the sickle disease process and pain, including cannabinoid receptors, mast cells, and the nociceptin receptor, in addition to integrative approaches including diet modification, acupuncture and perception modulation to relieve pain. Dr Gupta is also a recipient of the Excellence in Hemoglobinopathies Research Award from NHLBI to examine the potential of cannabinoids to treat pain and develop methods to quantify pain objectively.
Dr. Mona Hamdy, Egypt, Professor of Pediatrics, Cairo University and Consultancy of Hematology at Ministry of Health, Egypt
Mona Mohamed Hamdy is a Professor of Pediatrics, Cairo University and Consultant of Hematology at Ministry of Health, Egypt. She is a winner of the State Award in Medical Sciences and has been nominated the Award of Excellence from the Egyptian President in 2017.Professor Hamdy is a holder of a Master degree in Clinical Research Administration, Walden University, USA. She is the first Egyptian physician to hold this degree in clinical research.
Professor Hamdy is one of the founders of the Clinical Research Center at Faculty of Medicine of Cairo University with 15 years of experience as a co-investigator and a principle investigator in multicenter clinical trials. She has multiple publications in peer review journals and is an editor and reviewer in several peer review journals. She is the director of the Clinical Research Center at Faculty of Medicine of Cairo University as well as being a member of the Egyptian Research Network.
Dr. Hamdy is the head of the hematology clinic at the Nile Insurance Hospital and the supervisor of the center of excellence recently initiated at the Egyptian Center for Blood Transfusion Services (VACSERA). She was the deputy director of the Center of Social and Medical Center, Cairo University.
Denovan Hess, UK, Apheresis Clinical Nurse Specialist, Guy’s and St Thomas’ NHS Foundation Trust
Denovan qualified during the mid-1990’s and started his haematology-oncology career in 2000 as a bone marrow and heamoglobinopathy nurse. He was appointed as Apheresis Clinical Nurse Specialist in 2004 and later become the Lead Apheresis Nurse / Collection facility director for the collection facility. Denovan practice as lead nurse while being regulated by various bodies i.e. MHRA, JACIE, HTA etc. which lend him expertise in ‘Good Manufacturing Practice’. He possesses a wealth of experience in apheresis and is competent in performing Cellular product collections, Photopheresis, Plasma exchanges and Exchange blood transfusions procedures. With a special interest in heamoglobinopathy he successfully completed a module on heamoglobinophaty in 2011 and joined Guys and St Thomas/ GSTT Hospital in 2016. Denovan is currently the nurse lead for the GSTT apheresis service with one of the largest Exchange Blood Transfusions activities.
Dr. Salwa Hindawi, Saudi Arabia, Associate Professor in Haematology & Transfusion Medicine, Consultant Haematologist and Transfusion Medicine, King Abdulaziz University Hospital
- Chief Scientific Officer of Saudi Society of Transfusion Medicine.
- Member of WHO Expert Advisoty Panel for Blood Transfusion.
- Member of WHO ECBS Committee (Expert Committee for Biological Standardization)2013 to date.
- International Council for Commonality in Blood Banking Automation (ICCBBA) Board Member.
- Coordinator of Arabic Haemovigilance Network (AHN) group.
- Executive Committee member for ISBT-ATMF (Arabic Speaking Transfusion Medicine Forum) in the Eastern Mediterranean Region.
- Member in Editorial Board of Asian Journal of Transfusion Science, Indian Society of Blood Transfusion and Immunohaematology (ajts.org).
- College of American Pathology (CAP) Inspector
- American Association of Blood Banks (AABB) Assessor
Dr. Rob Hollingsworth, UK
Dr Rob Hollingsworth has twenty five years experience of delivering national and international healthcare projects from within academia, the NHS and Industry as managing director of MDSAS (www.mdsas.com).
His career began at Manchester University with his development and implementation of a European Intensive Care Expert System. He then joined the NHS where he worked for over 12 years being responsible for IT projects, including the development and management of systems for an International Clinical Study in twenty-nine countries worldwide, the largest of its kind ever.
He then setup MDSAS a Manchester-based health informatics consultancy where he was responsible for the development of the national IT strategy for the management of the UK Haemophilia Service. This project was an award winner for Excellence in Major Healthcare Development at the E-Health Insider Awards and a medal winner at the UK IT Industry Awards for UK Public Sector Project of the Year. MDSAS have since developed multiple national registries for NHS England including the Immunoglobulin Database, Haemoglobinopathy Registry and the Spinal Cord Injury Database. In the last three years’ the registries have managed over £1 billion in spend on treatment products alone.
Dr. Jo Howard, UK, Consultant Haematologist and Clinical Lead for Haematology at Guy’s and St Thomas’ NHS Foundation Trust, London.
Jo Howard is a Consultant Haematologist and Clinical Lead for Haematology at Guy’s and St Thomas’ NHS Foundation Trust, London, UK, a post she has held since 2007, and is Honorary Reader in Haemoglobinopathies at King’s College London. She is lead for the adult haemoglobinopathy service with responsibility for more than 700 patients, the majority of whom have sickle cell disease. Her research interests are in the management of sickle cell disease (SCD) in adults and she has been principal investigator or co-investigator in several clinical trials in SCD. In 2015 she co-authored at text book ‘Sickle Cell Disease in Clinical Practice’. She is chair of the UK Forum for Haemoglobin Disorders, chaired the UK peer review of adult services for Haemoglobinopathies and is editor of the UK Standards for care for Adults with SCD.
Dr. Lewis Hsu, USA, MD, PhD, is Professor of Pediatrics and Director of Pediatric Sickle Cell at the University of Illinois at Chicago, USA.
Dr. Hsu’s dedication to sickle cell disease began during his MD/PhD (Biophysics) at University of Rochester. He did pediatric residency at Yale and pediatric hematology-oncology fellowship at Children’s Hospital of Philadelphia. His research includes inflammatory vasculopathy due to hemolysis in mouse models of sickle cell. He was co-investigator in sickle cell pain management clinical trials and in the landmark STOP study to reduce stroke, and landmark bone marrow transplantation study. He volunteers as Vice Chief Medical Officer of the Sickle Cell Disease Association of America and as health educator. Recent White Papers are among the first to discuss Community Health Workers and Implementation Science for sickle cell disease. His global experience in sickle cell includes collaboration in Nigeria and Brazil.
Dr. Vishal Jayakar, UK, Consultant Haemato-Oncologist, Kingston Hospital NHS Foundation TrUST, Lead for Education & Training- Haematology Institute-King’s College, London, Hon Sen Lecturer-Imperial College, London
After completing his medical education and postgraduate training in internal medicine from King Edward Memorial hospital, in Mumbai, India with 7 distinctions, he did haematology SHO jobs at UCL and Royal Marsden whilst acquiring his MRCP qualification
He did his haematology specialist training at Imperial College NHS trusts (Hammersmith, St Mary’s and Royal Free hospitals)
He has been a Consultant Haematologist at Kingston Hospital, London since 2011.
He runs the popular FRCPath 1 and 2 exam oriented courses which are subscribed by haematology trainees from all over UK including delegates from UAE, Singapore, Hong-Kong, India and Srilanka
He also co-organises the venerable Imperial morphology courses with Prof Barbara Bain
He has been recently appointed at King’s College London as faculty/lecturer in an academic role for education and training
Dr. Julie Kanter, USA, Associate Professor of Pediatrics, Medical University of South Carolina.
Dr. Julie Kanter is a lifespan hematologist specializing in sickle cell disease. She is an associate professor of Pediatrics at the Medical University of South Carolina and runs the first all-ages, Lifespan Comprehensive Sickle Cell Center. Dr. Kanter works closely with national partners including the American Society of Hematology and the NIH to improve the lives of individuals living with sickle cell disease. In 2016, Dr. Kanter and her team was awarded one of eight of the NHLBI sickle cell disease implementation grants to form a sickle cell implementation center. Dr. Kanter is also very interested in expanding access to care for patients with sickle cell disease through the statewide program (SC)2. Dr. Kanter has authored and co-authored more than 50 articles, book chapters, and abstracts and hopes to train upcoming physicians and providers in sickle cell disease to expand the workforce for treating affected individuals.
Dr. Leena Karnik, UK, Consultant Paediatric Haematologist, St. Mary’s Hospital, Imperial College Healthcare NHS Trust
I graduated from the University of Bombay in 1994 and trained in paediatrics in India and in the UK before choosing to specialise in paediatric haematology. I did my haematology training in Birmingham’s Children’s Hospital and the Queen Elizabeth Hospital, Birmingham.
I have worked as consultant paediatric haematologist at St.Mary’s Hospital, Imperial College Healthcare NHS Trust since 2009 and have been the clinical lead of the unit since 2015. My interests are in bone marrow transplantation for haemoglobin disorders, late effects of bone marrow transplantation, education and training. I lead the paediatric bone marrow transplant Late Effects service which has a multidisciplinary approach with paediatric endocrinology and reproductive endocrinology.
Prof. Antonis Kattamis, Greece, Associate Professor of Paediatric Haematology-Oncology, University of Athens, Greece.
Antonis Kattamis is Associate Professor of Paediatric Haematology–Oncology at the University of Athens He received his MD degree (cum laude) in 1988 from University of Athens. He completed his training in Paediatrics at the University of Texas Health Science Center in San Antonio, USA and in Paediatric Haematology–Oncology at the Children’s Hospital of Philadelphia, University of Pennsylvania School of Medicine, USA.
He is the Head of the Division of Haematology-Oncology of the First Department of Paediatrics. In the Thalassaemia Unit of the Division, more than 400 regularly-transfused and 500 no-transfusion-dependent patients with congenital anemias are followed.
He has published more than 95 articles mainly in the field of hemoglobinopathies and of iron metabolism.
Dr. Fenella Kirkham, UK, Paediatric Neurologist, University Hospital, Southampton and Professor of Paediatric Neurology, Developmental Neurosciences Unit, UCL Great Ormond Street Institute of Child Health and Clinical and Experimental Sciences, University of Southampton.
Fenella Kirkham is a paediatric neurologist with an interest in acute paediatric neurological problems and sickle cell anaemia. She has developed an interest in the role of sleep in cognition in sickle cell disease and is currently analysing data from the East London and Sleep Asthma cohorts with her Post-docs, PhD and MSc students. She collaborates with haematologists in England, Europe, the USA and Africa. She ran a Phase II randomised controlled trial (RCT) of auto-adjusting continuous positive airways pressure with cognitive and MRI endpoints in children and adults at Guy’s and St Thomas’ and King’s College hospitals. In Autumn 2018, she will commence across London an RCT of Montelukast in children aged 3-8 years with the primary endpoint being the NIH toolbox processing speed.
Dr. Janet Kwiatkowski, US, Professor of Pediatrics, Perelam School of Medicine, University of Pennsylvania
Dr. Kwiatkowski is a Professor of Pediatrics at the Perelman School of Medicine of the University of Pennsylvania. She is the Director of the Thalassemia Program at the Children’s Hospital of Philadelphia and within the Sickle Cell Program she directs studies of cerebrovascular disease and iron chelation. She has participated in multiple collaborative research trials in sickle cell disease and thalassemia sponsored by the National Heart Lung and Blood Institute (NHLBI), Centers for Disease Control, private foundations, and pharmaceutical companies.
Dr. Robert Liem, US, Director of the Comprehensive Sickle Cell Program, Ann & Robert H. Lurie Children’s Hospital, Chicago
Dr. Robert Liem is the Director of the Comprehensive Sickle Cell Program at Ann & Robert H. Lurie Children’s Hospital of Chicago and an Associate Professor of Pediatrics at the Northwestern University Feinberg School of Medicine. His clinical interests center on hemoglobin disorders, including pediatric and adult sickle cell disease and thalassemia. He is an NIH-funded clinical investigator with active research programs focused on exercise responses, inflammation and vascular function as well as their impact on cardiopulmonary fitness, clinical outcomes and physical activity levels in children and young adults with sickle cell anemia. Other clinical and research interests include patient-reported outcomes, quality of life, transition to adult care, hydroxyurea adherence, health disparities and guidelines development.
Dr. Aurelio Maggio, Italy, Director of the Campus of Hematology “France e Piera Cutino”
I have a road background in gene therapy, with specific training and expertise in key research areas for this application. I developed over the last ten years of expertise in clinical methodology applied to the design and development of multicenter randomized clinical trials, as demonstrated in the publications. During the work conducted at the Hospital “V. Cervello in Palermo “, I carried out clinical, laboratory and research co ordinating team of Doctors, Nurses, Laboratory Technicians and Biologists in the field of haematological disorders with particular reference to Thalassemia. The undersigned have made it to 1 March 2000. N°: 36121 hospitalizations and n.72706 health services. I am a member of the Ministerial Committee of Experts for the controlled use of Deferiprone. Since 1995, the undersigned, clothed with a position of professional functions of Head of the Unit of Prevention and Therapy of thalassemia in the USL 60 of Palermo. From 1st March 2000 to today I played ,as a Director of Department of Hematology II ,activities of Hematology clinical and laboratory; I also coordinated several research projects and clinical laboratory. I have coordinated several multicenter randomized clinical trials on chelation therapy. I worked with several foreign institutions in research projects on transplantation in utero, gene therapy of hemoglobin diseases, the globin gene regulation, particularly activation of fetal hemoglobin.
Dr. Corrina McMahon, Republic of Ireland, Lead Haematologist, Our Lady’s Children’s Hospital
Graduate of University College Cork. She completed haematology training at St James and Mater Hospitals, Dublin and Paediatric/Paediatric Haematology Training at National Children’s Hospital and Our Lady’s Hospital Dublin, obtaining FRCPath in 1997. She received an MD from University of Dublin, Trinity College in 2006. She was appointed Paediatric Haematologist to the Childrens’s University Hospital Temple Street and Rotunda Maternity Hospital Dublin in 2002. She was appointed to her current position at Our Lady’s Children’s Hospital and St James Hospital Dublin in 2003 and is lead haematologist for Haemoglobinopathy services. She is a founding member of Eurobloodnet and a member of the clinical advisory group on Rare Diseases Ireland. She was appointed full Clinical Professor of Paediatrics, University College Dublin in 2017.
Dr. Caterina Minniti, USA, Professor of Clinical Medicine and Pediatrics, Einstein College of Medicine.
Dr. Minniti is Professor of Clinical Medicine and Pediatrics at Einstein College of Medicine. She is the Director of the Sickle Cell Center for Adults at Montefiore Hospital, whose mission is to provide exceptional, seamless, comprehensive, compassionate and individualized care, education, counseling and research for people living with sickle cell disease. Dr. Minniti is a clinical trial specialist and a translational researcher who believes that the best way to provide care for SCD patients is on a continuum, from birth to adulthood.
Daniel Monteiro, UK, Senior Biomedical Scientist, Special Haematology Department, Guy’s & St Thomas’ Hospital London.
Daniel Monteiro is a Senior Biomedical Scientist in the Special Haematology Department, at Viapath, Guy’s & St Thomas’ Hospital London. His main interest and expertise is in screening and diagnosis of haemoglobinopathies. His experience encompasses both protein and DNA based techniques. As part of his role he also works in white cell malignancy immunophenotyping and HIV immune monitoring using flow cytometry.
Daniel has completed his initial training in Portugal before moving to London where he completed his MSc in Biomedical Sciences at University of Westminster.
Besides actively participating in several projects involving haemoglobinopathies and haemoglobin studies he is involved in the training of all levels of scientific and medical staff as the Training Lead for Special Haematology department.
In addition to his laboratory role Daniel also lectured at the NHS Sickle Cell & Thalassaemia Screening Programme training days.
Luhanga Musumadi, UK, Advanced Nurse Practitioner for Haemoglobinopathies and the Lead Nurse for Adolescent transition, Guy’s and St Thomas’ NHS Foundation Trust.
Luhanga is an Advanced Nurse Practitioner (ANP) for Haemoglobinopathies and the Lead Nurse for Adolescent transition at Guy’s and St Thomas’ NHS Foundation Trust (GSTT)
He set up the transition service at GSTT in 2008 to support young people aged 13 – 24years, preparing them for transition while in Paediatrics and helping them settle into the adult services. The transition service provides a comprehensive multidisciplinary service addressing a range of issues concerning this age group from clinical to Social, Psychological, educational and general wellbeing.
His current research interests include the role of digital communication in current and future patient–clinician communication for NHS providers of specialist clinical services for young people.
He is also an Honorary Lecturer on the Adolescent care & Haemoglobinopathy Courses for post graduate Nurses at King’s College University, London.
Sharon Ndoro, UK, Senior Research and specialist Nurse for Sickle Cell and Thalassaemia, Evelina London Children’s Hospital.
Sharon Ndoro (RCN, BSc) is Senior Research and specialist Nurse for sickle cell and Thalassaemia at the Evelina London Children’s Hospital since 2012, responsible for the recruitment and follow up of patients in clinical and observational studies and also providing education and clinical support for children with haemoglobinopathy. She began her career in paediatric haematology in 2002 as a Sister at Royal London Hospital on a general haematology ward. In 2009-2012 Sharon worked as a specialist haemoglobinopathy nurse at East London NHS Foundation Trust providing genetic counseling, providing support for newly diagnosed patients and affected patients both in patient and in the community.
Dr. Helen New, UK, Consultant in Paediatric Transfusion Medicine at NHS Bloody and Transplant, London.
Dr Helen New is a Consultant in Paediatric Transfusion Medicine at NHS Blood and Transplant (NHSBT) in London, UK, and Honorary Senior Lecturer at Imperial College London. She is Chair of the UK Blood Services’ Standing Advisory Committee for Blood Components (SACBC), and is the consultant lead for the NHSBT London therapeutic apheresis service based at Great Ormond Street Hospital. She is an expert in paediatric transfusion, having led the writing group for the new BSH guidelines on fetal, neonatal and paediatric transfusion, and writes the paediatric chapter for the annual report of the UK haemovigilance scheme, SHOT.
Dr. Kwaku Ohene-Frempong, USA, Professor-Emeritus of Pediatrics at the University of Pennsylvania, USA
Dr. Ohene-Frempong, originally from Ghana, received undergraduate and medical education at Yale University, USA. After residency in pediatrics at New York Hospital-Cornell Medical Center, he completed a pediatric hematology fellowship at the Children’s Hospital of Philadelphia (CHOP), University of Pennsylvania. With a long career in sickle cell disease Dr. Ohene-Frempong is currently Professor-Emeritus of Pediatrics at the University of Pennsylvania, Attending Hematologist and Director Emeritus of the Comprehensive Sickle Cell Center, CHOP, and President of the Sickle Cell Foundation of Ghana. He is also Programme Coordinator, National Newborn Screening Programme for Sickle Cell Disease in Ghana
Ms. Giselle Padmore-Payne, UK, Roald Dahl Transition and Lead Clinical Nurse Specialist for Adult Haemoglobinopathies, Kings College Hospital
I hold a Masters in Social Research Methods , an Honours degree in Health and Social Care, Dip He in Nursing (Child Branch), Dip He in Sociology and Cert in Social Sciences. As a post graduate, I have continually developed my knowledge and skills in the area of Haemoglobinopathies. I am affiliated with Roald Dahl Marvellous Children’s charity as well as the South Thames Sickle and Thalassaemia Network (STSTN), UK Forum for Haemoglobinopathies and Sickle and Thalassaemia Association of Nurses Midwives and Allied Healthcare Professionals (STANMAP).
My Career started in Haemoglobinopathies over a decade ago. I currently work as the Roald Dahl Transition and Lead Clinical Nurse Specialist for Adult Haemoglobinopathies at Kings College Hospital. My role includes providing guidance and support to help young people manage their haemoglobinopathy. I organise Transition Workshops and patient support groups which encourage young people to share their experiences and help influence healthcare services to ensure that they receive the best possible healthcare. I work to educate other healthcare professionals, aiming to standardise good quality care for people affected by Sickle Cell Disease and Thalassaemia.
Dr. Maria Pelidis MD, UK, Consultant Paediatric Haematologist/Oncologist, Evelina London Children’s Hospital, London
Dr Maria Pelidis earned her medical degree from Harvard Medical School, United States. She went on to complete a residency in paediatrics at Children’s Hospital of Philadelphia and a fellowship in paediatric haematology and oncology at Johns Hopkins Hospital. She then worked at the Floating Hospital for Children, and was an Assistant Professor of Pediatrics at Tufts University Medical School in Boston Massachusetts until 2009 when she moved to London to work as a consultant at the Royal Marsden Hospital and St Georges Hospital. She is currently a consultant in Paediatric Haematology at the Evelina Children’s Hospital in London and her clinical interests include haemoglobinopathies, iron overload, iron deficiency, primary immune thrombocytopenia, bleeding disorders and bone marrow failure.
Dr. Alessia Pepe, Italy, Fondazione Monasterio – National Research Council, Pisa and Massa, Italy
Dr. Alessia Pepe graduated in Medicine in 1999 at University of Palermo, Italy where she also completed her postgraduate cardiological training in 2003 and radiological training in 2014. In 2007 she obtained the Ph.D. in “Non invasive diagnostic imaging of cardiovascular disease with 3D techniques” at the University of Palermo. Since 2006 she has been working at Cardiovascular MR Unit, Fondazione Monasterio – National Research Council, Pisa and Massa, Italy where more than 2500 patients are clinically scanned every year in the whole field of the cardiology using 1.5 and 3.0 T. Since 2014 she is the co-director of the MRI Cardiovascular MRI Unit in Pisa and she is the head for the CMR educational training in FTGM. Since 2015 she is contract professor at University of Palermo.
Dr. Fred Piel, UK, Acting Assistant Director at the UK Small Area Health Statistics Unit (SAHSU)
My research uses rigorous quantitative methods – including geostatistics and spatial models – to study a range of epidemiological questions related to human health. I am particularly interested in applications global health and in supporting improvements in low- and middle-income countries. I have more than 10 years of expertise on the global epidemiology and health burden of sickle-cell disease and other red cell disorders. I assembled contemporary evidence to inform public health policies in order to better prevent and manage these disorders, and ultimately improving the quality of life of patients. I am an expert of haemoglobinopathies for the Global Burden of Disease (GBD) Study.
I am involved in various ongoing “big data” projects on non-communicable disease epidemiology at the UK Small Area Health Statistics Unit (SAHSU), which is part of HDR UK London. I am currently the Acting Assistant Director of SAHSU. I am also the Training Programme Coordinator for the MRC-PHE Centre for Environment and Health, which is a joint collaboration between Imperial College London and Kings College London, to offer the best training and career development opportunities to PhD students and early-career fellows.
Prof Antonio Piga, Italy, Professor of Pediatrics at University of Torino.
Antonio Piga is Professor of Pediatrics at the University of Torino, where he teaches “Pediatrics” and “Evidence Based Medicine” and “History of Medicine”.
He is Dean of the School of Medicine at S. Luigi University Hospital, University of Torino. After graduation in Medicine, he specialized in Pediatrics and then in Hematology. Main professional activity is clinical medicine applied to his specialties, with strong orientation to genetic and rare diseases.
He developed and leads the Reference Centre for Hemoglobinopathies of Piemonte region, Italy, a dedicated Centre for care, research and prevention of these and relates diseases. He has a long experience as investigator and member of Safety/Advisory Boards of phase I-III clinical trials.
He is member of the scientific board of EuroBloodNet, the European Network for Rare diseases (ERN) for blood diseases.
Expert in medical librarianship, he served as President of the medical libraries of University of Torino and coordinator of the Health System Digital Library of Regione Piemonte.
He is author or co-author of more than 180 publications in peer-reviewed journals.
Research fields include thalassemia and sickle cell disease, disorders of iron metabolism, non invasive methods for body iron assessment and drug development, in particular iron chelators, pathogen inactivation in blood products and modulators of bone marrow activity.
Prof. John Porter, UK, Professor of Haematology and Consultant Haematologist, University College London Hospitals, London.
John Porter is Professor of Haematology and Consultant Haematologist at the University College London Hospitals in London, UK and head of the joint Red Cell Unit for UCLH and Whittington Hospitals. He graduated from the University of Cambridge in 1974 was awarded an FRCP by the Royal London College of Physicians in 1995 and FRCPath in Haematology by the Royal College of Pathologists in 1996.
His clinical and research focus has been treatments of thalassaemia and sickle cell disorders, with particular reference to iron overload, the mechanisms of iron chelation, the speciation and uptake of non-transferrin-bound iron (NTBI) species, the molecular basis of iron homeostasis in health and disease, and the actions and toxicities of mixed-ligand chelation therapies. He has received funding from many sources including the Medical Research Council (MRC), the Welcome Foundation and National Institutes of Health (NIH) for this work. Professor Porter has been the principal UK investigator in numerous multicentre clinical trials on iron chelation and is currently the principal UK investigator on ongoing trials with Luspatercept for correcting anaemia in Thlassaemias (Celgene) and Gene therapy for Thalassaemia (Bluebird Bio).
Dr. Noemi Roy, UK, Consultant Haematologist, Oxford University Hospitals NHS Foundation Trust
Dr. Noémi Roy trained in medicine in Edinburgh and carried out her haematology training in London and Oxford. Her main interests are haemoglobinopathies and rare inherited anaemias, and in particular the genetic investigation of inherited anaemias, including whole genome sequencing. She is also involved in investigating the management of iron deficiency in diverse patient groups. She is dedicated to using patients’ views to guide how research in conducted in haematology and coordinating best practice care in red cell disorders at the European level.
Prof. Giovanna Russo, Italy, Professor of Pediatrics, University of Catania.
Professor of Pediatrics, University of Catania; director of the Pediatric Hematology/Oncology Center, which provides health care for children with hematology/oncology/immunology diseseas. Her areas of clinical and research interests are hemoglobinopathies, sickle cell disease, rare anemias, platelet disorders.
She coordinates the Red Cell Working group of Italian Pediatric Hematology/Oncology Association, which has an ongoing programme to promote comprehensive care for sickle cell disease pediatric patients all over Italy.
Jean Sebastien Diana, France, Paediatrician, immunopaediatric fellow, Necker Hospital, Paris Descartes University.
Jean Sebastien Diana is a paediatrician, immunopaediatric fellow working as collaborator in the biotherapy department of Pr Marina Cavazzana. He graduated from the medical school of Paris in 2013 and has certificates in paediatric oncology and advanced immunology. He developed expertise for inborn errors of metabolism, immune deficiency, non malign haematology and stem cell transplantation. Currently, his main activity focuses on the progress in the haematopoietic stem cell mobilization as well as the various indications of gene and cellular therapies.
Dr. Claire Sharpe, UK, Reader and Honorary Consultant in Renal Medicine at King’s College London/King’s College Hospital.
Claire Sharpe is a Reader and Honorary Consultant in Renal Medicine at King’s College London/King’s College Hospital. She graduated in Medicine from University College London and after specializing in Renal Medicine commenced research in renal fibrosis at King’s College London under the supervision of Professor Bruce Hendry. She received a National Kidney Research Fund Clinical Training Fellowship in 1999 and was awarded her PhD in 2001. In 2002 she successfully obtained a Department of Health/NIHR 5-year Clinician Scientist Award and completed her specialist clinical training in 2004. In 2009 she was awarded a NHS/HEFCE Clinical Senior Lectureship and currently works as a clinical academic devoting 50% of her time to research and 50% to clinical activity.
Dr. Wally Smith, USA, Florence Neal Cooper Smith Professor of Sickle Cell Disease at Virginia Commonwealth University
Dr. Smith also serves as the Vice-Chairman for Research of the Division of General Internal Medicine and is the former Scientific Director of the Center on Health Disparities at VCU. In addition he is a member of the Institute of Medicine’s Committee on Standards for Trustworthy Guidelines.
Dr. Smith is an experienced implementation scientist and an expert in clinical and health services research in sickle cell disease. He has authored over 100 publications, and served as an investigator on over 50 externally funded grants and contracts.
These include the NIH-funded Pain in Sickle Cell Epidemiology Study (PiSCES, Principal Investigator), the Cooperative Study of Sickle Cell Disease, the Multicenter Study of Hydroxyurea in Sickle Cell Disease, the Sickle Cell Disease Clinical Research Network, (VCU site principal investigator), the Sickle Cell Disease Outcomes Research Network (principal investigator), and the NIH funded VCU Basic and Translational Research Program (BTRP) in sickle cell disease (principal investigator).
Prof. Ali Taher, UK, Professor of Medicine, American University of Beirut Medical Center, Beirut, Lebanon.
Ali Taher, is a Professor of Medicine at the Division of Hematology & Oncology, Department of Internal Medicine, at the American University of Beirut Medical Center (AUBMC) located in, Beirut, Lebanon. He is also the Vice Chair for Research at the Department of Internal Medicine at AUBMC. Dr. Taher is the Director of the Naef K. Basile Cancer Institute and the Founding Director Fellowship and Residents Research Program, Faculty of Medicine at the AUBMC. In addition, Dr. Taher is an integral member of a team of consultants at the Thalassemia Department of the Chronic Care Center (CCC) located in Hazmieh, Lebanon where he has contributed to state of the art prevention and management programs for thalassemia patients in the country. Dr. Taher is an adjunct Professor of Hematology & Medical Oncology at Emory School of Medicine, Atlanta, GA, USA and a Member of the “Alpha Omega Alpha Honor Medical Society”. Dr. Taher is well known for his dedication and active role in research on the various hemoglobinopathies, especially the thalassemias, both nationally and internationally. Achieving better patient outcomes and quality of life remains at the heart of his work.
Dr. Paul Telfer, UK, Clinical Haematologist, Haemoglobinopathy Services, Royal London Hospital.
Dr Paul Telfer is a clinical haematologist specialising in clinical care and laboratory diagnosis of Haemoglobinopathies in childhood, adolescents and adults. He is clinical lead for services at the Royal London Hospital, Barts Health NHS Trust and the East London and Essex Clinical Haemoglobinopathy Network. He has been a committee member of the British Society for Haematology, UK Forum for Haemoglobin Disorders, the Clinical Advisory Group for Specialist Commissioning in Haemoglobinopathies, and the National Sickle Cell and Thalassaemia Screening Programme. He is also an advisor to the UK Thalassaemia Society, and Thalassaemia International Federation. He has co-authored national guidelines for management of children and adults with sickle cell disease, and for thalassaemia. He has authored many research papers, and is co-author of ‘Sickle Cell Disease in Clinical Practice’ published by Springer.
He is chief investigator for the SCAPE trial, the East London Newborn Sickle Cell Cohort Study and Cyprus Thalassaemia Cohort study. He has been principal investigator for ASSERT, SITT, DEEP, GBT440 and BELIEVE trials.
Dr. Mark Velangi, UK, Consultant Paediatric Haematologist, Birmingham Children’s Hospital
Dr Mark Velangi graduated from the University of Edinburgh Medical School in 1991. He is a Consultant Paediatric Haematologist and, in 2006, joined the team at Birmingham Children’s Hospital which has a large sickle cell and thalassaemia unit. He has been the Lead for the Haemoglobinopathy service since 2014 and is also helping to develop the West Midlands Haemoglobinopathy network. He has developed a particular interest in acute complications of sickle cell disease.
Dr. Winfred Wang, USA, Member, Department of Haematology, St. Jude Children’s Research Hospital
Dr Wang trained at the University of California, Berkeley (BA, Chemistry); University of Chicago (MD); Montefiore Hospital and Medical Center, Bronx, NY and Kauikeolani Children’s Hospital, Honolulu, HI (paediatric residency); University of California Medical Center, San Francisco (paediatric haematology fellowship) Dr Wang has provided clinical care for children with non-malignant haematologic conditions for more than 40 years and has been an attending physician at St. Jude Children’s Research Hospital and LeBonheur Children’s Medical Center for the past 36 years. His major interests are clinical care of children with sickle cell disease and bone marrow failure disorders and clinical research in those areas. Most of his clinical research efforts are related to the use of hydroxyurea and the evaluation of the central nervous system in different populations of children with sickle cell disease. He was formerly the leader of the St. Jude Comprehensive Sickle Cell Center and the BABY HUG multi-center trial. Other current appointments are Professor, Dept. of Paediatrics University of Tennessee Center for the Health Sciences and Attending Physician, LeBonheur Children’s Medical Center.
Neil Westerdale, UK, Paediatric Nurse, Guy’s and St Thomas’ NHS Foundation Trust
Neill qualified as a general nurse in 1987 and as a paediatric nurse in1989. Neill worked as a paediatric nurse prior to working for Guy’s and St Thomas’ NHS Foundation Trust (GSTFT) and has previously managed children affected by sickle cell disease (SCD) and Thalassaemia. Neill was appointed by Guy’s & St Thomas NHS Foundation Trust in 1994 as the first hospital based clinical nurse specialist (CNS) in the speciality in the UK. In 2008 he was also appointed by the Trust as Advanced Nurse Practitioner (ANP) in the speciality. In the last 25 years at the Trust he has helped to establish the service as one of leading centres of the management of SCD in the UK.
Prof Ambroise Wonkam, South Africa, Professor of specialist medical geneticist, University of Cape Town, South Africa
Ambroise Wonkam is professor of specialist medical geneticist, in the Division of Human Genetics, and Deputy Dean Research, Faculty of Health Sciences, University of Cape Town, South Africa.
After a MD training from the Faculty of Medicine and Biomedical Sciences, University of Yaoundé I (Cameroon), he completed a thesis in Cell Biology in the department of Morphology, University of Geneva (Switzerland) and a PhD in Human Genetics (University of Cape Town, South Africa). Other salient aspects of Prof Wonkam’s background include his education as a medical geneticist at a highly reputable genetics department in Geneva (Switzerland). He subsequently practices medical genetics in both European and African contexts.
His research interests are reflected in more than 100 peer-reviewed publications, which are in molecular, clinical, educational and ethical aspects of medical and human genetics. His research focuses on: 1) Psychosocial Burden and Genomics modifiers of Sickle Cell Disease (SCD); 2) Genetics of hearing loss, and 3) Ethical and educational Issues in human genetics in Africa.
Dr. Josh Wright, UK, Consultant Haematologist, Sheffield Teaching Hospital NHS Foundation Trust
Josh Wright is a consultant haematologist in Sheffield where he is the current Yorkshire Humber and NE Network Haemoglobinopathy services lead. He has worked closely with the NHS screening programme helping to establish Laboratory standards and taken a lead role in the national Haemoglobinopathy services peer review programme.
The Annual Conference Academy for Sickle Cell and Thalassaemia (ASCAT) Conference is the essential event for all health care professionals who wish to learn more about the diagnosis and management of sickle cell disease and thalassaemia.
The conference provides unique exposure and access to network with international healthcare stakeholders including:
- A showcase to a highly relevant audience
- Access to industry influencers and decision makers
- Premium association with a leading edge authoritative event
- Access to key stakeholders
- Networking opportunities
For sponsorship enquiries, please contact firstname.lastname@example.org or call 020 7880 6244
In the UK, Novartis develops, manufactures and markets innovative medicines, devices and diagnostic tests which help improve patient outcomes. Based on four sites across the north and south of England, we employ approximately 1,500 people to serve healthcare needs across the whole of the UK, as well as supporting the global operations of Novartis by manufacturing the active pharmaceutical ingredients used worldwide in many medicines. In 2015 Novartis in the UK invested over £50million in R&D and is the largest commercial sponsor of clinical trials. For more information, please visit www.novartis.co.uk.
GLOBAL BLOOD THERAPEUTICS
GBT is a clinical-stage biopharmaceutical company determined to discover, develop and deliver innovative treatments that provide hope to underserved patient communities.
We are developing our late-stage product candidate, voxelotor (GBT440), as an oral, once-daily therapy for sickle cell disease, or SCD, and are currently enrolling patients in our pivotal program called the HOPE (Hemoglobin Oxygen Affinity Modulation to Inhibit HbS PolymErization) Study.
With its lentiviral-based gene therapies, T cell immunotherapy expertise and gene editing capabilities, bluebird bio has built an integrated product platform with broad potential application to severe genetic diseases and cancer. bluebird bio’s gene therapy clinical programs include its Lenti-D™ product candidate for the treatment of cerebral adrenoleukodystrophy and its LentiGlobin™ BB305 product candidate for the treatment of transfusion-dependent ß-thalassemia and severe sickle cell disease. bluebird bio’s oncology pipeline is built upon the company’s leadership in lentiviral gene delivery and T cell engineering. bluebird bio’s lead oncology program, bb2121, is an anti-BCMA CAR T program partnered with Celgene. bluebird bio also has discovery research programs utilizing megaTALs/homing endonuclease gene editing technologies with the potential for use across the company’s pipeline.
AstraZeneca is a global, science-led biopharmaceutical company that focuses on the discovery, development and commercialization of prescription medicines, primarily for the treatment of diseases in three therapy areas – Respiratory and Autoimmunity, Cardiovascular and Metabolic Diseases, and Oncology. The company is also active in inflammation, infection and neuroscience through numerous collaborations. AstraZeneca operates in over 100 countries. For more information: www.astrazeneca.com.
AstraZeneca is currently undertaking a development program with the anti-platelet drug Ticagrelor in Sickle Cell Disease. There are clinical and nonclinical evidence that platelets participate in the vaso-occlusive process and there is a rationale for the evaluation of antiplatelet therapies in management of Sickle Cell Disease. Currently, two studies have been completed, one in children 2-18 years and one in young adults (18-30 yrs), and the phase 3 study (HESTIA3) have started. For more information – please contact email@example.com (clinical development manager) or firstname.lastname@example.org (senior medical lead).
EMMAUS LIFE SCIENCES
Emmaus Life Sciences, Inc. is a biopharmaceutical company engaged in the discovery, development and commercialization of innovative treatments and therapies primarily for rare and orphan disease. Our lead drug, Endari™ (L-glutamine oral powder), was approved by the U.S. FDA in July of 2017 and the results of the Phase 3 clinical trial were published in the July 19, 2018 issue of the New England Journal of Medicine. Endari is currently marketed in the United States.
Terumo BCT, a global leader in blood component, therapeutic apheresis and cellular technologies, is the only company with the unique combination of apheresis collections, manual and automated whole blood processing, and pathogen reduction. We believe in the potential of blood to do even more for patients than it does today. This belief inspires our innovation and strengthens our collaboration with customers.
Our therapeutic apheresis device, Spectra Optia® Apheresis System, can be used to perform red blood cell exchange (RBCX) procedures.
Agios is focused on creating disease-modifying medicines to treat rare genetic metabolic disorders that are unaddressed by existing therapeutic approaches. Our goal is not to address the symptoms, but to develop treatments that significantly slow, halt or reverse disease. Mitapivat (AG-348) is an investigational novel, first-in-class, orally available, potent, selective small molecule activator of pyruvate kinase-R (PKR). PK deficiency is an inherited disease that causes a lifelong condition called hemolytic anemia, a certain type of anemia where your body destroys red blood cells, as well as other serious complications. While many people with PK deficiency get diagnosed in their early years of life as infants or children, others – particularly adults and patients on the milder end of the spectrum of disease severity – sometimes remain undiagnosed for years. Disease manifestations may significantly affect daily activity and quality of life.
The focus at ApoPharma is on the development of drugs for the treatment of debilitating and life-threatening diseases caused or worsened by iron. The main product is the iron chelator Ferriprox® (deferiprone), which is approved for the treatment of systemic iron overload in transfusion-dependent patients with thalassemia syndromes. In patients with thalassemia major, Ferriprox has been shown to be successful in reducing the incidence of iron-associated cardiac disease and in increasing survival, as described in the EMA Summary of Product Characteristics for Ferriprox. Current studies are exploring the use of deferiprone in other populations: iron-overloaded patients with sickle cell disease, and patients with conditions of local brain iron overload, including neurodegeneration with brain iron accumulation and Parkinson’s disease. For information about those studies, please contact ApoPharma at email@example.com.
NHS BLOOD AND TRANSPLANT
NHS Blood and Transplant (NHSBT) save and improve lives through the provision of blood and transplantation services to the NHS. NHSBT manage the donation, storage and transplantation of blood, organs, tissues, bone marrow and stems cells.
NHSBT’s Therapeutic Apheresis Services (TAS) is a major provider of apheresis services, for adults and paediatrics, within the NHS. TAS delivers approximately 9,000 treatments, for over 1,500 patients, each year.Treatments are provided 24/7, 365 days a year, from eight sites across England; either within a dedicated unit or at the bedside.
TAS offer a portfolio of apheresis services from a range of specialties, including:
- Automated Red Cell Exchange – for patients with Sickle Cell Disease
- Plasma Exchange – for Neurology, Renal and Haematology patients;
- Stem Cell Harvest – for Haematopoietic Stem Cell Transplantation
- Extracorporeal Photopheresis – for Chronic and Acute Graft vs. Host Disease
Sobi is an international specialty healthcare company dedicated to rare diseases. Our mission is to develop and deliver innovative therapies and services to improve the lives of patients. The product portfolio is primary focused on Haemophilia, Inflammation and Genetic diseases. We also market a portfolio of specialty and rare disease products across Europe, the Middle East, North Africa and Russia for partner companies. Sobi is a pioneer in biotechnology with world-class capabilities in protein biochemistry and biologics manufacturing.
The South Thames Sickle Cell and Thalassaemia Network is a haemoglobinopathy collaboration led by health professionals, including consultants, nurses, psychologists and others, at King’s College Hospital, Evelina Children’s Hospital and Guy’s and St Thomas’ Hospital NHS Foundation Trusts. The Network region includes hospitals across South London and South East England.
Our mission is to improve the patient experience by offering better treatment outcomes for people with sickle cell disease and thalassaemia. We seek to achieve this by providing a peer-support network and educational programme, producing patient information and guidelines for healthcare professionals, collaborating in specialist clinics, holding patient forums and workshops, producing a patient newsletter (Red Cell News), and contributing to research.
Day One: 22 October 2018
08.00-09.00 – REGISTRATION
09.00-10.20 – Recent Updates
Chair: Dr. Rachel Kesse-Adu, UK
- Dr. Bart Biemond, Netherlands: Sickle cell disease
- Dr. Maria Cappellini, Italy: Thalassaemia
- Dr. Pierre Buffet, France– Malaria and the Spleen
10.20 – 10.40 Refreshment Break
10.40-12.35 – Sickle Cell Cohort Studies and Long-Term Outcomes
Chair: Dr. Winfred Wang, US
- 10.40 – 11.05 – Dr. Winfred Wang, US – Progress on SCCRIP – A Contemporary Sickle Cell Lifetime Cohort Study
- 11.05 – 11.25 – Dr. Beatrice Gulbis, Belguim: Neonatal Screening for Sickle Cell Disease Improves Outcome
- 11.25 – 11.45- Dr. Kwaku Ohene-Frempong, US: Newborn Sickle Cell Screening in Sub-Saharan Africa: a public health challenge
- 11.45 – 12.15 – Drs Kofi Anie/ Lewis Hsu: A sustainable Sickle cell cohort –Stakeholder Engagement and Application of Implementation Science
- 12.15 – 12.35 – Dr. Fred Piel, UK: Epidemiology in Sickle Cell Disease
12.35-13.15 – Lunch, Exhibition and Networking
13.15 – 15.05 – Pain Management symposium
Chair: Dr. Deepika Darbari, US
- 13.15 – 13.40 – Dr. Deepika Darbari, US – Pain mechanisms and phenotypes in SCD
- 13.40 – 14.05 – Dr. Wally Smith, US – Chronic pain in SCD
- 14.05 – 14.25 – Dr. Antonio Piga, Italy – Pain in Thalassemia: Differential diagnosis
- 14.25 – 14.45 – Dr. Andrew Campbell, US – SCD pain around the globe (CASIRE group)
- 14.45 – 15.05 – Dr. Kalpna Gupta, US – Targeting novel mechanisms of pain in sickle cell disease
15.05-15.25 – Refreshment Break
15.25-17.15- Parallel Session – How I manage sessions
Chair: Dr. Corinna McMahon, Republic of Ireland
- 15.30 – 15.55 – Dr. Helen New, UK – Automated Red Cell Exchange (elective and 24/7 emergency services)
- 15.55 – 16.20 – Dr. Mona El-Ghamrawy, Egypt – Stroke in childhood
- 16.20 – 16.50 – Dr. Subarna Chakravarthy, UK – Liver problems in SCD
- 16.50 – 17.15 – Dr. Leena Karnik, UK – Long term monitoring after blood and marrow transplantation in children with haemoglobinopathies
Chair: Dr. Biree Andemariam, US
- 15.30 – 15.55 – Dr. Wale Atoyebi, UK – Hydroxyurea in Adults with SCD
- 15.55 – 16.20 – Dr. Jo Howard, UK – Acute Chest syndrome
- 16.20 – 16.50 – Dr. Caterina Minniti,US – Pulmonary hypertension
- 16.50 – 17.15 – Mr Luhanga Musumadi, UK – Engagement with Adolescents and Young adults
- 17.15 – 17.25 – Olaolu Baikie, Poster Presentation Welcome
17.30 Reception Drinks and Poster Walk
Day Two: 23 October 2018
Chair Dr. Ali Taher, Lebanon
- 09.00 – 09.30 – Dr. Ali Taher, Lebanon – Thalassaemia and cancer
- 09.30 – 09.55 – Dr. Salwa Hindawi, Saudi Arabia – Update Experience in Transfusion
- 09.55 – 10.20 – Dr. Antonis Kattamis, Greece – Chelation therapy challenges in thalassaemia
- 10.20 – 10.40 – Dr. Alessia Pepe, Italy – Cardiac Complication in Thalassaemia
10.40-11.00 – Refreshment Break
11.00- 13.05 – Thalassaemia – New Insights
Chair: Dr. Mark Velangi, UK
- 11.00 – 11.30 – Dr. Paul Telfer, UK – Collaborative research and datasets across Europe
- 11.30 – 12.00 – Dr. Antonio Piga, Italy -Targeting ineffective erythropoiesis
- 12.00 – 12.30 – Dr. Noemi Roy, UK – Building blocks of genome therapies
- 12.30 – 13.00 – Dr. Moshsin Badat, UK – Genome editing to ameliorate thalassaemia major phenotype
13.00-14.00 – Lunch, Exhibition and Networking
14.00-15.40 – Parallel Sessions
A – Chronic organ damage in Sickle Cell Disease
Chair: Dr. Giovanna Russo, Italy
- 14.00 – 14.20 – Dr. Fenella Kirkham, UK – Stroke in Sickle Cell Disease
- 14.20 – 14.40 – Dr. Raffaela Colombatti, Italy – CNS abnormalities in children with SCD-beyond stroke and silent infarcts
- 14.40 – 15.00 – Dr. Anne Greenough, UK – Asthma treatment in Sickle Cell Disease
- 15.00 – 15.20 – Dr. Josh Wright, UK – Chronic liver disease in adults with Haemoglobinopathy
- 15.20 – 15.40 – Dr. Claire Sharpe, UK – Renal Disorders is adult with SCD
B – Parallel Session – Psychology Session
Chair: Hatel Bhatt, UK
- 14.00 -14.25 – Ms. Mina Abedina, UK and Ms. Hatel Bhatt, UK – Case reviews exploring the social, emotional and cognitive functioning of children and adolescents with Sickle Cell Disease
- 14.25 – 14.50 – Dr. Kofi Anie, UK – Impact of social stigma on coping with Sickle Cell Disease
- 14.50 – 15. 15 – Dr. Marsha Treadwell, US – Influence of religiosity and spirituality on coping and research participation in Sickle Cell Disease
- 15.15 – 15.30 – Dr. Robert Liem, US – Muscle Tissue Oxygenation During Exercise in Children with Sickle Cell Anemia
- 15.30 – 15.40 – Further Discussion
15.40 – 15.50 – Refreshment Break
15.50- 17.00 – Parallel Sessions
A – Technology Session
Chair – Dr. Julie Kanter, US
- 15.50 – 16.15 – Dr. Julie Kanter, US – Telemedicine
- 16.15 – 16.35 – Dr. Ambroise Wonkam, South Africa – An ontology-driven data capturing and catalogue framework for the development of research and clinical databases in Sickle Cell Disease
- 16.35 – 16.55 – Dr. Fedele Bonifazi, Italy – Experimental and Real-World Data Sharing
B – Sickle Cell and Thalassaemia Registry
Dr. Eugene Oteng.Ntim, UK
- 15.50– 16.15 – Dr. Rob Hollingsworth, UK – Haemoglobinopathy Registry
- 16.15 – 16.35 – Dr. Cathy Coppinger, UK – Newborn outcome projects
- 16.35 – 16.55 – Dr. Beatrice Gulbis, Belguim – update from European collaboration – EuroBloodNet
17.00 – Conference Close
Day Three: 24 October 2018
08.00 – 08.40 – REGISTRATION
08.40 – 10.30 – Genetics – Genomics
Chair: Dr. Noemi Roy, UK
- 08.40 – 09.15 – Dr. John Porter, UK – Targeting Hepcidin/Ferroportin axis
- 09.15 – 09.40 – Dr. Ambroise Wonkam, South Africa – Genomics of Sickle cell Disease and perspective for patient care
- 09.40- 10.05 – Dr. Jean-Sebastian Diana, France – Gene Therapy
- 10.05 – 10.30 – Dr. Josu de la Fuente, UK – Bone Marrow transplantation in SCD
10.30-11.00 – Refreshment Break
11.00- 13.00 Education / Nursing Parrallel sessions
Chair: Mrs Nkechi Anyanwu, UK
A – Nursing
- 11.00 -11.15 – Mr. Steven Hardy, US – Computerized Working Memory Training Improves Cognition in Youth with Sickle Cell Disease
- 11.15 – 11.30 – Miss. Sharon Ndoro, UK – Specialist Nursing input in the management of Pain is SCD
- 11.30 – 11.50– Mr. Denovan Hess, UK – Running blood transfusion programme in haemoglobinopathies
- 11.50 – 12.20 – Mr. Neil Westerdale and Ms. Giselle Padmore-Payne, UK – Nurse Led clinics in SCD
- 12.20 – 12.40 – Ms. Bessie Cipriano, UK – Day in the life a Research Nurse Coordinator
- 12.40 – 13.00 – Mrs. Nkechi Anyanwu, UK – Quality improvement for patients in the Community
B – Education
Chair: Dr. Rachel Kesse-Adu, UK
- 11.00 – 11.40 – Dr. Vishal Jayakar, UK – Red Cell Morphology and Quiz
- 11.40 – 12.00 – Daniel Monteiro, UK – Haemoglobinopathy HPLC cases
- 12.00 – 12.20 – Dr. Perla Eleftheriou, UK – Thalassaemia Case Scenarios
- 12.20 -12.40 – Dr. Rachel Kesse- Adu, UK – Sickle Case Scenarios
- 12.40 -13.00 – Dr. Maria Pelidis, UK – Paediatric Specific Haemoglobinopathy Cases
13.00-13.50 – Lunch, Exhibition and Networking
13.50 – 15.10 – Case Studies/Oral Abstracts
Chair: Dr. Andrew Campbell, US
- 13.50- 14.05 – Mr. Ashiraf Ssebandeke – Feed a Warrior Program: Nutritional Management of Undernutrition in Sickle Cell Disease
- 14.05-14.20 – Brenda Poku – Understanding fatigue Experiences of Adolescents with Sickle Cell Anaemia in Ghana: A Constructivist Grounded Theory Study
- 14.20 – 14.35 – Dr. Jonathan Lancashire, UK – Implementation of an Advanced Nurse Practitioner led clinic to manage increasing demand for Hydroxycarbamide within the West Midlands Region
- 14.35 – 14.50 – Dr. Biree Andermariam, US – IMR-687: a Potent PDE9i in Phase 2 for Sickle Cell Disease
14.50 – 15.10 – Refreshment Break
15.10-16.20—Debate : I would recommend Indefinite Blood transfusion for Primary Stroke Prevention in Sickle cell Disease
Chair: Dr. Maria Pelidis, UK
- Dr. Janet Kwiatkowski, US – YES
- Dr. Miguel Abboud, Lebanon – NO
16.20-16.40 Conferences close – Dr. Baba Inusa, UK
16.40 – Conference Close
24 June 2019