Identification and management of FH full guideline

Click the link to download: Identification and management of familial hypercholesterolaemia (FH) Full guideline (PDF)


The History of the UK Simon Broome Familial Hyperlipidaemia Register

Dr Joan Slack first instigated the idea of a register of familial hyperlipidaemias in 1976 and the register was set up by Professor Jim Mann in 1980.  It was funded initially by the Simon Broome Heart Research Trust which was a charity founded by Mrs Katherine Broome, widow of Simon Broome who had died prematurely of heart disease.  In recognition of this support, the register was named “The Simon Broome Familial Hyperlipidaemia Register”.  

From its inception the work was overseen by a Scientific Steering Committee (SSC) and Professors Jim Mann and Gil Thompson were among its earliest members.  The Register has been co-ordinated from Oxford, initially by Professor Margaret Thorogood, then from 1990 until 2014 directed by Professor Andrew Neil and currently by Professor Steve Humphries at UCL.  

Information about registered patients with familial hyperlipidaemias is entered on to a computer database, providing a resource for research with the aim of furthering more effective diagnosis and treatment and preventing early heart disease.  Subjects recruited include more than 3,650 with familial hypercholesterolaemia (FH) and nearly 340 with severe hypertriglyceridaemia, although FH has been the predominant focus of research.  In 1993, Katherine Broome stepped down as Chairman of the Simon Broome Heart Research Trust and the charity was dissolved after the British Hyperlipidaemia Association (BHA) had agreed to accept responsibility for overseeing the Register. 

The work of the Scientific Steering Committee of the Register continued under the auspices of the BHA and subsequently The Hyperlipidaemia Education and Atherosclerosis Research Trust (HEART UK) after the BHA and the patient group, The Family Heart Association, merged in 2002.  Since then a small portion of the running costs have been unwritten by HEART UK.  Some funding to support the Register activities has been obtained by small grants from a number of pharmaceutical companies such as Astra Zeneca, Pfizer and Merck Sharpe and Dohme, each of the order of £10,000 or less, and for none of these grants was there any restriction on their use.