Dr Elijah Behr, Consultant Cardiologist, St George’s Hospital, London
Dr Belinda Gray, Inherited Cardiac Conditions Fellow, St George’s University of London

Project summary

Research suggests that a proportion of cases of sudden infant death syndrome (SIDS) may be due to inherited diseases, including heart disease. This study aims to determine whether inherited diseases are present in the family of SIDS cases, and whether heart testing of family members should be a more common practice.

The results of this study may help to understand the importance of inherited diseases in SIDS, and improve how future risk of SIDS or sudden death might be identified and managed in family members. Data from the study may also feed into the 100,000 Genomes Project, as unexplained deaths are now included in its ‘rare disease’ category.

The study will compare the DNA of the baby who died (via tissue samples held back at the post mortem examination), with DNA from both the baby’s mother and father. The second part of the study involves both parents completing an interview and heart tests such as an electrocardiogram (ECG), to be held at St George’s University in London, for which travel costs will be reimbursed. Parents are able to opt for inclusion in just the genetic testing, either at St George’s or by attending a more local hospital. The study is expected to last for two years.