Swiss National Registry of Grown up Congenital Heart Disease Patients

Last updated: April 9, 2025
Sponsor: University Hospital, Basel, Switzerland
Overall Status: Active - Recruiting

Phase

N/A

Condition

Pentalogy Of Cantrell

Congenital Heart Disease

Heart Disease

Treatment

N/A

Clinical Study ID

NCT02258724
EKBB 180/13
  • Ages > 18
  • All Genders

Study 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.

Eligibility Criteria

Inclusion

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

Exclusion Criteria:

None

Study Design

Total Participants: 5000
Study Start date:
September 01, 2013
Estimated Completion Date:
December 31, 2033

Study 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.

Connect with a study center

  • Basel University Hospital

    Basel, 4031
    Switzerland

    Active - Recruiting

  • Bern University Hospital Inselspital

    Bern, 3010
    Switzerland

    Active - Recruiting

  • Hôpitaux Universitaires de Genève HUG

    Geneva, 1205
    Switzerland

    Active - Recruiting

  • Centre Hospitalier Universitaire Vaudois CHUV

    Lausanne, 1011
    Switzerland

    Active - Recruiting

  • Kantonsspital St.Gallen

    St Gallen, 9007
    Switzerland

    Active - Recruiting

  • University Hospital Zurich

    Zurich, 8091
    Switzerland

    Active - Recruiting

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