Swiss National Registry of Grown up Congenital Heart Disease Patients

Recruiting

• Conditions: Congenital Heart Defect; Congenital Heart Disease

• Registration Number: NCT02258724
• Lead Sponsor: University Hospital, Basel, Switzerland

Brief Summary

Due to successes in the last decades in pediatric heart surgery and cardiology, 90-95% of the children with congenital heart disease reach adult age.This results in an increasing number of adults or "grown-ups" with congenital heart disease (ACHD or GUCH patients) that require special health care organization and training programmes. Long term complications of these GUCH patients and optimum treatment strategies are still poorly known. The aim of this registry is to collect quantitative and qualitative data regarding GUCH patients treated in specialised centres in Switzerland.

Detailed Description

The SWISS GUCH registry will capture epidemiologic data, diagnosis, type of earlier treatment / intervention and cardiac complications. Following each visit, the cardiac complications will be captured as well as the mortality.

Every GUCH patient coming for a visit in one of the specialized organisation participating to the registry will be asked to participate. After signing the informed consent form, the patient data will be coded and captured in a web-based data base (secuTrial®).

Pooling the data from the different centres will enable a nation wide register to be established. More robust data on the size and composition of the GUCH population will be obtained. Also long term prognosis of specific patient group will be derived.

Study Timeline

• Study Start: 2013-09
• Study First Submitted: 2014-09-24
• Study First Submitted QC: 2014-10-02
• Study First Posted: 2014-10-07
• Status Verified: 2025-04
• Last Update Submitted: 2025-04-09
• Last Update Posted: 2025-04-10
• Primary Completion: 2033-12
• Study Completion: 2033-12

Recruitment & Eligibility

• Status: RECRUITING
• Sex: All
• Target Recruitment: 5000

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

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Mortality	1 year and yearly up to 20 years

Secondary Outcome Measures

Name	Time	Method
Cardial complications	1 year and yearly up to 20 years	Requiring in-patient hospitalisation, strokes, re-intervention

Trial Locations

Locations (6)

Basel University Hospital; 🇨🇭 Basel, Switzerland

Hôpitaux Universitaires de Genève HUG; 🇨🇭 Geneva, Switzerland

Bern University Hospital Inselspital; 🇨🇭 Bern, Switzerland

Kantonsspital St.Gallen; 🇨🇭 St Gallen, Switzerland

Centre Hospitalier Universitaire Vaudois CHUV; 🇨🇭 Lausanne, Switzerland

University Hospital Zurich; 🇨🇭 Zurich, Switzerland