Swiss National Registry of Adults With Congenital Heart Disease (SACHER)

Nationales Register Zur Erfassung Von Erwachsenen Mit Angeborenen Herzfehlern

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.

Study Overview

• Status: Recruiting
• Conditions: Congenital Heart Disease; Congenital Heart Defect

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 Type: Observational
• Enrollment (Estimated): 5000

Contacts and Locations

• Study Contact: Name: Daniel Tobler, MD; Phone Number: +41 61 265 52 14; Email: daniel.tobler@usb.ch

Study Locations

• Switzerland
  • Basel, Switzerland, 4031
    • Recruiting
    • Basel University Hospital
    • Contact: Daniel Tobler, MD; Phone Number: +41 61 265 52 14; Email: daniel.tobler@usb.ch
  • Bern, Switzerland, 3010
    • Recruiting
    • Bern University Hospital Inselspital
    • Contact: Mathias Possner, PD. MD; Phone Number: +41 31 632 7859; Email: mathias.possner@insel.ch
    • Contact: Fabienne Schwitz, MD; Phone Number: 7679 +41 31 632 21 11; Email: fabienne.schwitz@insel.ch
  • Geneva, Switzerland, 1205
    • Recruiting
    • Hôpitaux Universitaires de Genève HUG
    • Contact: Judith Bouchardy, MD; Phone Number: +41 22 372 75 31; Email: judith.bouchardy@hcuge.ch
  • Lausanne, Switzerland, 1011
    • Recruiting
    • Centre Hospitalier Universitaire Vaudois CHUV
    • Contact: Judith Bouchardy, MD; Phone Number: +41 79 55 65 467; Email: judith.bouchardy@chuv.ch
    • Contact: Tobias Rutz, MD; Phone Number: +41 79 55 670 33; Email: tobias.rutz@chuv.ch
  • Sankt Gallen, Switzerland, 9007
    • Recruiting
    • Kantonsspital St.Gallen
    • Contact: Dominik Stambach, MD; Phone Number: +41 71 494 10 51; Email: dominik.stambach@kispisg.ch
  • Zurich, Switzerland, 8091
    • Recruiting
    • University Hospital Zurich
    • Contact: Matthias Greutmann, MD; Phone Number: +41 44 255 38 83; Email: Matthias.Greutmann@usz.ch

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: No

• Sampling Method: Non-Probability Sample

Study Population

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).

Description

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 Plan

How is the study designed?

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Time Frame
Mortality	1 year and yearly up to 20 years

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Cardial complications	Requiring in-patient hospitalisation, strokes, re-intervention	1 year and yearly up to 20 years

Collaborators and Investigators

• Sponsor: University Hospital, Basel, Switzerland
• Investigators: Principal Investigator: Daniel Tobler, MD, University Hospital, Basel, Switzerland

Publications and helpful links

General Publications

• 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.
• 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.
• 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.

Study record dates

Study Major Dates

• Study Start: September 1, 2013
• Primary Completion (Estimated): December 1, 2033
• Study Completion (Estimated): December 1, 2033

Study Registration Dates

• First Submitted: September 24, 2014
• First Submitted That Met QC Criteria: October 2, 2014
• First Posted (Estimated): October 7, 2014

Study Record Updates

• Last Update Posted (Actual): May 4, 2026
• Last Update Submitted That Met QC Criteria: April 28, 2026
• Last Verified: April 1, 2026

More Information

Terms related to this study

• Keywords: Adult; Registry; Grown-up congenital heart disease
• Additional Relevant MeSH Terms: Cardiovascular Diseases; Heart Diseases; Congenital Abnormalities; Cardiovascular Abnormalities; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Heart Defects, Congenital
• Other Study ID Numbers: AO_2026_00031