FASCOPE study (version 1.0)
Research type
Research Study
Full title
Family screening After Sudden Cardiac death: the impact On Patient Experience of a standardised pathway
IRAS ID
353838
Contact name
Heather Moore
Contact email
Sponsor organisation
University of Plymouth
Duration of Study in the UK
1 years, 2 months, 4 days
Research summary
Background:
Sudden cardiac death (SCD) is a natural death due to a cardiac cause within 1 hour of symptom onset. It is the commonest cause of sudden unexplained deaths in individuals over 1 year of age. SCD is often due to a previously undiagnosed inherited cardiac conditions (ICC), particularly if the victim is under 50 years old. International guidelines recommend a standardised approach to investigating victims for an ICC and screening their relatives to prevent further SCDs within the family. However, screening practice and access is very variable within the UK, as is screening engagement by family members. For 15 years Somerset NHS foundation trust has run a standardised SCD screening pathway which the coroner signposts the next-of-kin to. Similar pathways are now being set up across the UK through an NHS national transformation project.Objectives:
We want to increase family engagement in screening pathways after the SCD of a relative by understanding what might influence a decision not to be screened. We want to adapt SCD screening pathways to best support family members. To do this we will:
• Explore the barriers and facilitators to screening uptake.
• Explore family members experience of a SCD pathway including both clinical and genetic screening.How we will do this:
We will interview 15-30 individuals whose families were signposted to the Somerset SCD pathway after the death of a relative. Participants would not be recruited until at least 6 months after the death of their relative. Interviews will be semi structured and thematic analysis will be used to identify patterns within the interviews that answer our research questions.REC name
Wales REC 7
REC reference
26/WA/0141
Date of REC Opinion
29 May 2026
REC opinion
Favourable Opinion