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: email@example.com
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:
Maggie Heinrich is the project manager and the first point of contact for signing up to the register, and for general queries or issues.
She can be contacted on 01628 897 905 or 07387253338. Or by email at firstname.lastname@example.org
The project team is responsible for managing the register and you will be contacted by Maggie Heinrich who will give you information on how to sign up.
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|