Pioneering Database Launched To Help Families With Inherited Heart Conditions, The Heart Hospital, London

Consultant cardiologist Dr Perry Elliott and his colleagues at The Heart Hospital have pioneered a national database to provide vital information about a heart condition which tragically kills hundreds of seemingly healthy young people each year.


The groundbreaking database - funded by the NHS - will help increase understanding about cases of Sudden Cardiac Death in young people and the implications for other family members who may be at risk.


Post mortem information logged centrally by pathologists will be available to cardiologists and geneticists and will include details of underlying pathologies, frequency and geographical locations.


In the long-term the information will be linked to other clinical databases to help assess family members who might also be at risk.


At the official launch, Professor Roger Boyle, National Director for Heart Disease and Stroke at the Department of Health, congratulated Dr Elliott and his colleagues and said it would make an 'enormous difference' to families getting the expert information, advice, treatment and support they need.


As well as establishing the database, Dr Elliott is also co-chair of the new UK Cardiac Pathology Network Steering group which is developing a network of pathology specialists to provide local coroners with expert advice in sudden death cases.


Dr Elliott said: "The national database for young sudden death victims represents a major step-forward in the development of clinical services dedicated to the management of inherited cardiovascular disease.


"For the first time, we will be able to map sudden death cases across the UK and to monitor implementation of national guidelines on pathological examination. The database will also provide cardiologists and geneticists with a vital resource that will help us to support families affected."


Sudden cardiac death in individuals under 35 years old is often caused by inherited disorders of cardiac muscle (cardiomyopathy) and cardiac rhythm (ion channelopathies). The genetic nature of many of these diseases means that their relatives are at risk.


John Coopey, on behalf of the Coroners' Officers Association said: "The information collected will be of great benefit to pathologists and the coroners' service, but most importantly to families by giving them clear information on cause of sudden cardiac death and so help reduce the number of such deaths."


University College London Hospitals (UCLH)


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