The Electronic Cardiovascular Genetics (eCG) Clinic for Presymptomatic Genetic Counselling
Inherited cardiovascular conditions generally inherit following an autosomal dominant pattern. When a mutation is detected in the proband, relatives can have predictive DNA testing, and - when they are carrier - be monitored and timely treated if needed. Currently, less than half of relatives attends genetic counsellin
| Condition(s) | Inherited Cardiac Disease |
|---|---|
| Status | Recruiting |
| Phase | NA |
| Study type | Interventional |
| Summary | Inherited cardiovascular conditions generally inherit following an autosomal dominant pattern. When a mutation is detected in the proband, relatives can have predictive DNA testing, and - when they are carrier - be monitored and timely treated if needed. Currently, less than half of relatives attends genetic counselling. With the eCG Family Clinic, an easily accessible virtual clinic which better suits the needs and preferences of relatives will be offered. At the eCG Family Clinic, relatives will receive tailored information to support informed decision-making, a DNA-test at home if desired, and can be referred for local cardiac monitoring if relatives appear to be a carrier. Implementation of the eCG Family Clinic in clinical practice is compared to current practice in this clinical tria |
| Who can participate | Inclusion Criteria: Probands: * \> 18 y/o * Diagnosed with inherited hypertrophic cardiomyopathy (HCM) or dialted cardiomyopathy (DCM)) * Class 4 or 5 variant identified. * Access to a working laptop or computer device. At risk relatives: * \> 18 y/o * First degree family member, or second degree in case of a deceased first degree relative * Access to a working laptop or computer device. Healthcare professionals: \- Genetic counsellors of the genetics department directly involved in the care given to the family. Exclusion Criteria: \- Insufficient control of the Dutch language or digital skills. |
| Ages | 18 Years to 90 Years |
| Sex | All |
| Lead sponsor | UMC Utrecht |
| Locations | Utrecht, Utrecht, Netherlands |
| Start date | 2023-11-15 |
| NCT ID | NCT06431425 |
| Official listing | https://clinicaltrials.gov/study/NCT06431425 |