Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium.
Philip Moons, Lore Bovijn, Werner Budts...
https://pubmed.ncbi.nlm.nih.gov/21098444Actively Recruiting
Age: 18Years +
All Genders
ID02258724
Swiss National Registry of Adults With Congenital Heart Disease to Collect Long-Term Health Data
Led by University Hospital, Basel, Switzerland · Updated on 2026-05-04
5000
Participants Needed
6
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Researchers are collecting detailed health information about adults who were born with congenital heart disease and are being treated in specialized centers in Switzerland. This registry study aims to better understand long-term complications and treatment outcomes for this growing population, as advances in pediatric heart care have allowed most children with congenital heart defects to reach adulthood. The study is observational and focuses on gathering data rather than testing treatments. Participants in this study will have their medical data, including diagnoses, previous treatments, and any cardiac complications, recorded after each visit to a participating center. The information is entered securely into a web-based database to create a nationwide registry. This registry will help provide a clearer picture of the adult congenital heart disease population in Switzerland and improve knowledge about their long-term health outcomes. During the study, participants' health status will be monitored annually for up to 20 years, with a focus on tracking cardiac complications and mortality. The study involves routine clinical visits where data is collected based on patients' ongoing care. The registry helps researchers understand the health trends and risks in this group over time without altering usual medical care.
CONDITIONS
Brief Title
Swiss National Registry of Adults With Congenital Heart Disease
Who Can Participate
Age: 18Years +
All Genders
Eligibility Criteria
You may qualify if you...
- Adult (above 18 years of age) with congenital heart disease, treated in one of the Swiss centres specialized for GUCH patients
- Signed informed consent form
- For patients with trisomy 21, consent must be given by parents or legal guardian
You will not qualify if you...
- None
AI-Screening
AI-Powered Screening
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Your Study Journey
Screening
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Surveillance
Duration - Up to 20 years
Participants who undergo routine care are observed to collect long-term health data including cardiac complications and mortality.
Annual visits for up to 20 years
Trial Site Locations
Total: 6 locations
1
Basel University Hospital
Basel, Switzerland, 4031
Actively Recruiting
2
Bern University Hospital Inselspital
Bern, Switzerland, 3010
Actively Recruiting
3
Hôpitaux Universitaires de Genève HUG
Geneva, Switzerland, 1205
Actively Recruiting
4
Centre Hospitalier Universitaire Vaudois CHUV
Lausanne, Switzerland, 1011
Actively Recruiting
5
Kantonsspital St.Gallen
Sankt Gallen, Switzerland, 9007
Actively Recruiting
6
University Hospital Zurich
Zurich, Switzerland, 8091
Actively Recruiting
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Research Team
D
Daniel Tobler, MD
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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Published Research Related To This Trial
The incidence of congenital heart disease.
Julien I E Hoffman, Samuel Kaplan
https://pubmed.ncbi.nlm.nih.gov/12084585Birth prevalence of congenital heart disease worldwide: a systematic review and meta-analysis.
Denise van der Linde, Elisabeth E M Konings, Maarten A Slager...
https://pubmed.ncbi.nlm.nih.gov/22078432Patterns of Incidence Rates of Cardiac Complications in Patients With Congenital Heart Disease.
Ketina Arslani, Nico Roffler, Marzena Zurek...
https://pubmed.ncbi.nlm.nih.gov/30527151