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 recent changes have been made to the register?
Several changes have been made in recent years that we wanted you to know about. The first is that with the retirement of the long-standing curator of the Register, Oxford-based Professor Andrew Neil. This role has been taken over by Professor Steve Humphries (pictured alongside) at University College London (UCL). Professor Neil continues to contribute to the work of the Register, but all the paper and electronic records have now been moved to UCL. We of course continue to maintain the highest level of security over these confidential records, and they are now safely stored (under lock and key!) in the Rayne Building at UCL and behind the UCL electronic fire wall.
What other data is collected?
It is important for doctors to know the outcomes of early or late diagnosis and treatment. Each clinic is responsible for the ongoing collection of treatment data. It is also very helpful to us to know when, why and how people on the register pass away. In order to do this we have to provide some personal information on each participant (name, address, date of birth, NHS number) to the UK Health and Social Care Information Centre, who then send us copies of the relevant death certificate when someone passes away.
This helps us to see how different patient pathways might predict the cause and time of death. Not surprisingly we have confirmed that being male, being older, smoking and already having heart disease are strong predictors of early death from heart disease, while being well treated with lipid-lowering drugs such as statins clearly improves life expectancy, in some cases so that well-treated FH patients could have a normal life expectancy.
We have recently received updated information on the number of deaths that have occurred over the last 5 years and we are now planning to carry out fresh analysis and see if any further light can be shed on identifying those patients at highest risk of future heart disease so they can be more closely monitored and more effectively treated.
Where can I find out more?
We hope you find this information useful, and you can find out more about FH, its causes and the work of the Register from other pages on the website. We very much hope you will continue to be part of the Register, but if for any reason you wish to withdraw your consent from being part of this research, please contact the Register Curator Professor Steve Humphries who will ensure that your paper records are destroyed and electronic data are deleted. See contacts details alongside this page.