Sudden Cardiac Death

SCD can be confirmed at post-mortem by the identification of a cardiomyopathy (damage to the heart muscle).  In situations where a cardiomyopathy is not present, the pathologist may suggest suspected SCD due to an arrythmia (an irregular heartbeat and the other main cause of SCD) which cannot be detected by post-mortem.  With the family’s consent, genomic testing of the patient’s DNA after death can sometimes confirm the underlying cause of SCD.

Project Overview 

Led nationally by NHS East GMS, this project aims to develop an integrated pathway that enables all families, where SCD is confirmed or suspected by the Coroner’s Office, to access genomic testing on stored DNA.

The GMS is working in partnership with the Coronial Service, the British Heart Foundation, Cardiac Risk in the Young, and Inherited Cardiac Condition clinics, to help identify families where SCD has occurred, offer them genomic testing, and monitor and manage their condition. This approach will help reduce the risk of other family members experiencing SCD.

Family members of anyone who dies from cardiomyopathy or suspected arrythmia will be invited to access genomic testing.

Work in the North East and Yorkshire

The pilot site for the project was run by the Sheffield coroner’s office supported by the ICC in Sheffield led by Professor Nigel Wheeldon and the Sheffield Clinical Genomics Service.

Following a successful pilot study the project is now being rolled out across the whole North East and Yorkshire geography to involve all the coroners in the area and the ICCs in Leeds and Newcastle.

Individuals who have died from a potential inherited cardiac condition are being identified by the Coroner at post-mortem, samples are being stored with the consent of the family, and the families are being referred through to the ICC for screening and genetic testing.

Further Information

British Heart Foundation – Inherited Heart Conditions