Researchers

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.

Get involved

The Lullaby Trust is helping to recruit families to take part in this study. In order to participate, you must be the parents of a baby or young child up to and including the age of four, who died due to SIDS or unexplained causes (this may have been given as ‘unascertained’ or ‘unknown’, or ‘sudden unexplained death in childhood’ (SUDC) if your child was over the age of 12 months), since the year 2000. In order for the genetic testing to be conducted, you will also need to give the research team access to tissue samples that were taken at your child’s post mortem examination.

Our Policy and Research Manager, Lucy Lyus, will be happy to talk to you more about the study and what is involved. If you would like to proceed, your details will be passed to the researchers who will contact you with further information.

Please contact Lucy Lyus at The Lullaby Trust on 0203 597 7064 or lucyl@lullabytrust.org.uk if you would like to be part of this important research.

We are also here for support if you need it, no matter how much time has passed since your baby died. You can call our support team on 0808 802 6868 or email support@lullabytrust.org.uk.