Actively Recruiting
The Electronic Cardiovascular Genetics (eCG) Clinic for Presymptomatic Genetic Counselling
Led by UMC Utrecht · Updated on 2025-09-17
170
Participants Needed
1
Research Sites
158 weeks
Total Duration
On this page
Sponsors
U
UMC Utrecht
Lead Sponsor
A
Amsterdam UMC
Collaborating Sponsor
AI-Summary
What this Trial Is About
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 trial.
CONDITIONS
Official Title
The Electronic Cardiovascular Genetics (eCG) Clinic for Presymptomatic Genetic Counselling
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Probands over 18 years old
- Diagnosed with inherited hypertrophic cardiomyopathy or dilated cardiomyopathy
- Have a class 4 or 5 genetic variant identified
- Have access to a working laptop or computer device
- At-risk relatives over 18 years old
- Are a first-degree family member, or second-degree if the first-degree relative is deceased
- Have access to a working laptop or computer device
- Genetic counsellors directly involved in family care
You will not qualify if you...
- Insufficient control of the Dutch language or digital skills
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
University Medical Centre Utrecht
Utrecht, Utrecht, Netherlands, 3584 CX
Actively Recruiting
Research Team
M
Marlies van Lingen, MSc.
CONTACT
L
Lieke van den Heuvel, PhD
CONTACT
How is the study designed?
Study Type
INTERVENTIONAL
Masking
NONE
Allocation
RANDOMIZED
Model
PARALLEL
Primary Purpose
HEALTH_SERVICES_RESEARCH
Number of Arms
2
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