Who runs the FH Paediatric Register?

Prof Steve Humphries is the project lead and has overall responsibility for the success of the register.

Prof Humphries is the British Heart Foundation Professor of Cardiovascular Genetics. He has been in that post, carrying out ground breaking research into FH, for over 20 years. He has a particular interest in genetic testing for FH. He can be contacted at the Centre for Cardiovascular Genetics, BHF Laboratories, Institute of Cardiovascular Science, University College London. Email: steve.humphries@ucl.ac.uk

Dr Uma Ramaswami is the clinical lead and will respond to clinical queries regarding the register. She also attends conferences and seminars to speak about the register and promote recruitment. Dr Ramaswami is a Consultant in Inherited Metabolic Disorders at The Royal Free Hospital, London. She can be contacted by email:
Uma.Ramaswami@nhs.net

They are supported by the Project Executive made up of senior managers and clinicians within the Royal College of Physicians, where the Register is based. The Project Executive can be contacted through Catherine Gallagher who has responsibility for the Register on behalf of the RCP.

The Steering Group meets several times a year and gives strategic direction and on-the-ground advice and support to the project team.

The Paediatric FH Steering Group

The Steering Group meets four times a year. The responsibilities of the Steering Group are:

to oversee the project
to provide expert direction to ensure the project is feasible and useful to clinicians entering information and providing services to children with FH
to ensure the societies / organisations that are represented receive feedback on project progress and outcomes
to identify current and future potential projects and partnerships to sustain developments
to consider applications for use of the data for researchers and approve and reject on the basis of agreed criteria
to consider regular reports on research and ensure that data is being used for its stated purpose

The members are:

Prof Steve Humphries (Chairman)	Project Lead and British Heart Foundation Professor Cardiovascular Genetics, University College London
Dr Kevin Stewart	Clinical Director, Clinical Effectiveness and Evaluation Unit, Royal College of Physicians
Dr Uma Ramaswami	Clinical Lead of Paediatric FH Register and Consultant Metabolic Paediatrician
Rhona Buckingham	Director, Clinical Effectiveness and Evaluation Unit, Royal College of Physicians
Dr Nigel Capps	Chair of the Medical Scientific & Research Committee, HEART UK
Jules Payne	Chief Execuive, HEART UK
Dr Anupam Chakrapani	Chairman, British Inherited Metabolic Disease Group
Dr Peter Dale	Paediatrician - Aneurin Bevan Health Board
Prof Anne Greenough	RCPCH VP Science & Research; Head, King's College London School of Medicine Director of Education and Training
Professor Andrew Neil	Professor of Clinical Epidemiology, University of Oxford and Simon Broome Study Group
Jo Whitmore	clinical lead for the FH nurse project (British Heart Foundation)
Dr Mary Seed	Lipidologist and Clinical Lead of Apheresis Register
Mr Mark Fisher	Patient Representative
Anna Bishop-Bailey	Project Manager (pH Associates)
Dr Peter Robinson	Consultant in Paediatric Metabolic Medicine, Scottish representative
Lorraine Priestley-Barnham	Clinical Nurse Specialist in Familial Hypercholesterolaemia and Cascade Screening