Registry for adults with congenital heart disease in Switzerland
Nationales Register Zur Erfassung Von Erwachsenen Mit Angeborenen Herzfehlern
This study is collecting information from adults with congenital heart disease in Switzerland to better understand their health and improve their treatment options.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 5000 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | University Hospital, Basel, Switzerland Academic / other |
| Locations | 6 sites (Basel and 5 other locations) |
| Trial ID | NCT02258724 on ClinicalTrials.gov |
What this trial studies
This registry aims to collect and analyze data on adults with congenital heart disease (GUCH patients) who have been treated in specialized centers across Switzerland. It will gather both quantitative and qualitative information, including patient demographics, types of previous treatments, and long-term cardiac complications. By pooling data from various centers, the registry seeks to enhance understanding of the GUCH population and improve treatment strategies. Patients will be asked to participate during their visits and will provide informed consent for their data to be recorded in a secure database.
Who should consider this trial
Good fit: Ideal candidates for this registry are adults over 18 years of age with congenital heart disease who have received treatment at specialized centers in Switzerland.
Not a fit: Patients who do not have congenital heart disease or those who are under 18 years of age will not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could lead to improved healthcare strategies and treatment outcomes for adults with congenital heart disease.
How similar studies have performed: Other registries focusing on congenital heart disease have shown success in improving patient outcomes and understanding long-term complications, indicating that this approach is promising.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: Adult (above 18 years of age) with congenital heart disease, treated in one of the Swiss centre with specialized organisation for GUCH patients. Signed informed consent. Patients with trisomy 21: the parents or legal guardian will have to give the consent. Exclusion Criteria: None
Where this trial is running
Basel and 5 other locations
- Basel University Hospital — Basel, Switzerland (Recruiting)
- Bern University Hospital Inselspital — Bern, Switzerland (Recruiting)
- Hôpitaux Universitaires de Genève HUG — Geneva, Switzerland (Recruiting)
- Centre Hospitalier Universitaire Vaudois CHUV — Lausanne, Switzerland (Recruiting)
- Kantonsspital St.Gallen — Sankt Gallen, Switzerland (Recruiting)
- University Hospital Zurich — Zurich, Switzerland (Recruiting)
Study contacts
- Principal investigator: Daniel Tobler, MD — University Hospital, Basel, Switzerland
- Study coordinator: Daniel Tobler, MD
- Email: daniel.tobler@usb.ch
- Phone: +41 61 265 52 14
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.