NHS and Coronial Sudden Unexpected Death (NHS-C-SUD ) Pilot
Introduction to project
The Sudden Unexplained Death pilot will develop the pathways necessary to ensure equitable access to a genomics driven clinical programme that address the needs of families affected by Sudden Unexpected Death.
What is the condition?
Sudden Unexpected Death, also known as Sudden Cardiac Death (SCD) usually happens when an abnormal heart rhythm known as an arrhythmia, goes untreated and leads to a cardiac arrest.
Sometimes, the heart condition that causes the arrhythmia can be inherited. Some Inherited Cardiac Conditions (ICC) affect the electrical impulses of the heart, whilst other affect the structure of the heart muscle. These conditions include:
- Long QT syndrome (LQTS)
- Brugada syndrome (BrS)
- Catecholaminergic polymorphic ventricular tachycardia (CPVT)
- Hypertrophic cardiomyopathy (HCM)
- Dilated cardiomyopathy (DCM)
- Arrhythmogenic cardiomyopathy (ARVC)
Many of our personal traits are inherited, meaning they come from our ancestors such as parents, grandparents, and great-grandparents. Inherited Cardiac Conditions are often passed down from one generation to the other, meaning the relatives of those who passed away suddenly, may also be at risk.
What are we doing?
The NHS-C-SUD pilot works to identify the cause of death as well as to diagnose and treat relatives who are potentially at risk of a genetic condition. All SUD cases, aged 1-60 years, reported to HM Coroners in the participating sites will be included, provided a cardiac genetic cause is suspected. The pilot is running across the seven GMSA sites, including Central and South. The objectives of the programme are to:
- Establish consistent pathology referral practice for SUD including use of expert pathology.
- Establish routine tissue retention for histopathology and DNA extraction in suitable SUD cases.
- Establish coronial and NHS communication pathways for referrals of families for genetic testing and clinical evaluation.
- Establish mechanisms for standardised post-mortem genetic testing and reporting via NHS Genomic Laboratory Hubs (GLH) to support timely evaluation and cascade testing of families.
- Develop and disseminate nationally applicable best practice pathways for NHS adoption employing a toolkit approach.
- Ensure the engagement and input of patient and support groups with an interest in inherited cardiac disorders.
Where can I find out more?
- https://www.bhf.org.uk/heart-health/conditions/inherited-heart-conditions
- http://www.cardiomyopathy.org/
- http://www.c-r-y.org.uk/
Who can I contact?
Georgiana Neculau, Lead Nurse/Programme Coordinator Georgiana.neculau@uhb.nhs.uk