GENVID Study
Research type
Research Study
Full title
GENetic testing VIDeo (GENVID) Study
IRAS ID
333600
Contact name
Ruth McGowan
Contact email
Sponsor organisation
NHS GG&C Research and Innovation (R&I)
Duration of Study in the UK
3 years, 0 months, 2 days
Research summary
Genetic testing is now one of the cornerstones of diagnosis in inherited cardiac conditions (ICCs) including inherited cardiomyopathies and inherited arrhythmias. The identification of a causative gene variant in an individual affected with an ICC can guide management for that individual as well as for their family members who may also have the familial gene variant and be at risk of developing the ICC.
Due to the increase in genetic testing as well as the impact of Covid and staff shortages, the waiting time for genetic testing in Glasgow is presently greater than one year. This has had a negative impact for individuals who are often anxious waiting for testing and may end up getting potentially unnecessary investigations in the meantime through attendance at cardiology appointments.
Digitalised testing pathways have been adopted for diagnostic testing in cancer and shown to be acceptable and feasible (1). To our knowledge, genetic testing has not been delivered in this way previously within the UK. This project (run initially as a pilot) will offer relatives at risk of or affected with an ICC an alternative pathway to access genetic testing and counselling, to reduce waiting times for patients and streamline the service. They will be invited to listen to a recorded video, then access genetic testing, avoiding a lengthy wait for a GC appointment.
REC name
South Central - Oxford C Research Ethics Committee
REC reference
24/SC/0175
Date of REC Opinion
13 May 2024
REC opinion
Favourable Opinion