Professor Steve Humphries is curator of the Simon Broome Register and can be contacted by writing to him at: Rayne Building, University College London, 5 University Street, London WC1E 6JJ or by email.
What is the Simon Broome Register?
The Simon Broome Register is a register of people with inherited blood fat (lipid) conditions. It was first set up in 1980 and is named after Simon Broome, a gentleman who died prematurely of heart disease. The register was initially funded by a charity set up by his widow. The use of the register is carefully overseen by a scientific committee.
How is the Simon Broome Register used?
Anonymised information about patients with inherited blood lipid conditions is entered onto a secure computer database. This provides an invaluable resource for research. The aim is to help doctors make a more effective diagnosis, offer better treatments and ultimately to prevent early heart disease.
How many people are on the Simon Broome Register?
Since 1980 the details of about 4000 people have been added to the Simon Broome Register.
How did I get onto the Simon Broome Register?
The patients in the Simon Broome Register have been recruited from 20 accredited Lipid Clinics around the UK mainly during the period 1980 to 1998, although recruitment is still on-going.
Part of the role of the Simon Broome Committee was to ensure that each clinic had the relevant expertise to be able to accurately diagnose and manage inherited blood conditions. Most of the people on the register have familial hypercholesterolaemia (FH) but about 1 in 10 have a severe form of inherited hypertriglyceridaemia.
The clinics that contribute to the register were chosen very carefully. Each one was required to use approved standards for measuring blood fats and to do this only on fasting blood samples. Clinics also received training to enable them to:
• seek and obtain patient consent
• complete the registration process
• identify relatives who might also be affected.
Since 2002 the Simon Broome Register has become one of the patient and research activities overseen by HEART UK – The Cholesterol Charity.
Thank you for your support
Thank you for consenting to be part of the Simon Broome Register! Your participation over the years has been very important, as it has allowed us to carry out ground breaking research into the causes and prevention of early heart disease. You can find out more about this here. The Register also had a major influence on NICE guidelines, published in 2008, for the treatment and management of FH patients. More recent findings will play a part in the update of these guidelines which will be reporting in early 2017.