Sudden unexpected deaths (SUDs) can often be attributed to inherited cardiac conditions. Identifying the cause of these deaths is crucial, not only for understanding the circumstances of the individual’s passing but also for assessing potential risks to surviving family members. This project aims to enhance the processes involved in identifying genetic cardiac conditions, ensuring that affected families receive timely and appropriate clinical care.
The project seeks to establish an effective and equitable pathway that enables families affected by a sudden unexpected death to access genetic testing and specialised cardiac care when necessary.
Since its inception in 2021, the project has been dedicated to developing and implementing standardised pathways that integrate genomic medicine into coronial investigations. The goal is to ensure equitable access to genetic testing and specialist cardiac services for bereaved families. Initially tested in seven pilot sites across England, the initiative has now entered the national rollout phase, expanding beyond the original sites.
The project is actively implementing a structured approach to improving access to specialist care for families affected by SUD. This multidisciplinary effort involves collaboration between experts across different medical and legal fields, ensuring that best practices are adopted nationwide. The project has now progressed to a broader implementation phase, with more than seven sites participating across England.
A multidisciplinary team has been established to drive this initiative, initially across seven pilot coronial jurisdictions. The team comprises:
- Coroners and Coroners’ Officers – Facilitating post-mortem investigations and referrals.
- Pathologists – Conducting autopsies and identifying potential genetic cardiac causes.
- Cardiologists – Providing clinical assessments for at-risk relatives.
- Geneticists and Genetic Scientists – Conducting and interpreting genetic testing.
- Specialist Nurses – Acting as key coordinators, facilitating first-degree relative screening.
Key project components include:
- Optimising referral pathways between Coroners and Inherited Cardiac Conditions (ICC) Services to ensure families are guided towards appropriate clinical follow-up.
- Focusing on first-degree relatives of individuals who have suffered a sudden death within a participating coronial jurisdiction, where post-mortem findings suggest a possible inherited cardiac cause.
- Engaging directly with bereaved families to provide them with information, support, and access to genetic and specialist cardiac care.
- Enhancing access to genetic testing and specialist evaluation, aiming to improve long-term health outcomes for at-risk relatives.
The project aims to:
- Identify and support at-risk relatives of individuals whose sudden death is suspected to have a genetic cardiac cause.
- Ensure timely access to genetic testing and follow-up care through specialist ICC services.
- Improve the overall referral pathway for families experiencing a SUD, ensuring they receive the necessary medical and psychological support.
- Drive systemic improvements in coronial and healthcare processes, facilitating a national model for integrating genetic and cardiac assessment into post-mortem investigations.
For further information and support, please see the links below to relevant charities working in inherited cardiac conditions and sudden cardiac death:
CRY (Cardiac Risk in the Young)
British Heart Foundation (BHF)
For more information, please contact: