NCT02258724|Recruiting
Swiss National Registry of Adults With Congenital Heart Disease
SACHER
Nationales Register Zur Erfassung Von Erwachsenen Mit Angeborenen Herzfehlern
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SACHER
Nationales Register Zur Erfassung Von Erwachsenen Mit Angeborenen Herzfehlern
Sponsor study identifier
observational
5,000
1 country
6
Study Start
September 2013
Date type not reportedThis date has not been verified as actual or estimated.
Primary Completion
December 2033
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Study Completion
December 2033
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
December 2033
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
September 2013
Date type not reportedThis date has not been verified as actual or estimated.
September 24, 2014
Actual (reported)October 7, 2014
Actual (reported)December 2033
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
December 2033
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Mortality
1 year and yearly up to 20 years
Cardial complications
1 year and yearly up to 20 years
GUCH patient treated in one of the Swiss centre with specialized organisation GUCH (University Hospital Basel, University Hospital Zurich, University Hospital Lausanne, University Hospital Geneva, Canton Hospital StGallen).
Basel University Hospital
Basel, 4031, Switzerland
Bern University Hospital Inselspital
Bern, 3010, Switzerland
Moons P, Bovijn L, Budts W, Belmans A, Gewillig M. Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium. Circulation. 2010 Nov 30;122(22):2264-72. doi: 10.1161/CIRCULATIONAHA.110.946343. Epub 2010 Nov 22.
Hoffman JI, Kaplan S. The incidence of congenital heart disease. J Am Coll Cardiol. 2002 Jun 19;39(12):1890-900. doi: 10.1016/s0735-1097(02)01886-7.
Daniel Tobler, MD
University Hospital, Basel, Switzerland
First Submitted
September 24, 2014
First Posted
October 7, 2014
Study Start
September 2013
Date type not reportedThis date has not been verified as actual or estimated.
Primary Completion
December 2033
EstimatedRisk Factors for Acquired Cardiovascular Disease in Adults With Congenital Heart Disease
Contact the study team to confirm eligibility.
Hôpitaux Universitaires de Genève HUG
Geneva, 1205, Switzerland
Centre Hospitalier Universitaire Vaudois CHUV
Lausanne, 1011, Switzerland
Kantonsspital St.Gallen
Sankt Gallen, 9007, Switzerland
University Hospital Zurich
Zurich, 8091, Switzerland
van der Linde D, Konings EE, Slager MA, Witsenburg M, Helbing WA, Takkenberg JJ, Roos-Hesselink JW. Birth prevalence of congenital heart disease worldwide: a systematic review and meta-analysis. J Am Coll Cardiol. 2011 Nov 15;58(21):2241-7. doi: 10.1016/j.jacc.2011.08.025.
Arslani K, Roffler N, Zurek M, Greutmann M, Schwerzmann M, Bouchardy J, Rutz T, Ehl NF, Jost CA, Tobler D; SACHER Investigators. Patterns of Incidence Rates of Cardiac Complications in Patients With Congenital Heart Disease. Can J Cardiol. 2018 Dec;34(12):1624-1630. doi: 10.1016/j.cjca.2018.09.010. Epub 2018 Sep 29.
Planned date reported by the registry; this milestone is not confirmed as achieved.
Study Completion
December 2033
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Last Updated
May 4, 2026
Record last verified: 2026-04
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Source: ClinicalTrials.gov.
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