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Clinical Trial 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.


Clinical Trial 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 Design


Related Conditions & MeSH terms


NCT number NCT02258724
Study type Observational [Patient Registry]
Source University Hospital, Basel, Switzerland
Contact Daniel Tobler, MD
Phone +41 61 265 52 14
Email daniel.tobler@usb.ch
Status Recruiting
Phase
Start date September 2013
Completion date December 2033

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