Virtual clinic for genetic counseling in inherited heart diseases
Official title: The Electronic Cardiovascular Genetics (eCG) Clinic for Presymptomatic Genetic Counselling: Evaluation of Uptake, Psychological Impact and Satisfaction Among Users
Run by UMC Utrecht · NCT06431425 · Data updated 2026-11-12
This study is testing a new online genetic counseling service for families of people with inherited heart diseases to see if it gets more relatives involved compared to traditional in-person counseling.
Quick facts
| Study type | Interventional |
|---|---|
| Ages | 18 Years to 90 Years |
| Sex | All |
| Enrollment | 170 (estimated) |
| Sponsor | UMC Utrecht Academic / other |
| Locations | 1 site (Utrecht, Utrecht) |
| Status | Recruiting |
| Started | November 15, 2023 |
| Main results expected | December 1, 2026 |
| Study ends | December 1, 2026 |
| Registry record updated | September 17, 2025 |
| Trial ID | NCT06431425 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates include adults over 18 who are first or second-degree relatives of individuals diagnosed with inherited hypertrophic cardiomyopathy or dilated cardiomyopathy.
✕Probably not a fit
Patients who lack proficiency in the Dutch language or digital skills may not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This clinical trial evaluates the effectiveness of the eCG Family Clinic, a virtual platform designed to provide genetic counseling for relatives of individuals diagnosed with inherited cardiovascular conditions. The trial compares the eCG Family Clinic's approach to traditional genetic counseling methods, aiming to increase participation rates among at-risk relatives. Participants will receive tailored information, the option for at-home DNA testing, and referrals for local cardiac monitoring if necessary. The study involves probands, at-risk relatives, and genetic healthcare professionals in a non-inferiority randomized controlled trial design.
Why it matters
Potential benefit: If successful, this approach could significantly improve access to genetic counseling and monitoring for individuals at risk of inherited cardiac diseases.
How similar studies have gone: Other studies have shown success with virtual health interventions, suggesting that this approach may be effective in increasing genetic counseling uptake.
Who can join: the full rules
Show full inclusion / exclusion criteria
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.
Where it's running
-
University Medical Centre Utrecht
Utrecht, Utrecht, Netherlands Recruiting
Study contacts
- Study coordinator: Marlies van Lingen, MSc.
- Email: m.n.vanlingen@umcutrecht.nl
- Phone: +31887553745
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Research on inherited heart conditions in children
This study is trying to learn more about inherited heart conditions in children and their parents by collecting health information over five years to improve understanding and treatment.
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Long-term observation of ultra-rare inherited neurological diseases.
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Understanding genetic causes of inherited eye diseases
This study is trying to find out the genetic reasons behind inherited eye diseases by looking at families with affected members and testing participants aged four and older.
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A one-eye injection study tests whether PUMCH-E111 can be safely given and help vision for people with RLBP1-related inherited retinal dystrophy.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.