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Congenital Heart DiseaseSACHERNCT02258724

Swiss National Registry of Adults With Congenital Heart Disease

An observational study of Congenital Heart Disease and Congenital Heart Defect, run by University Hospital, Basel, Switzerland at 6 sites in Switzerland.

Recruiting

Looking for participants now. Contact the study team or a site below to ask about taking part.

Sites and contacts
Official record
Search all trials

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… Read more about this study

Who is it for?
Ages 18 years and older
How many people
5,000 participants
Where
6 sitesSwitzerland
Study dates
Sep 2013to Dec 2033
How long will I take part?
20 Years
Phase
Observational
Are there results?
Not yet: the study is under way

Key requirements

Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.

  • Ages 18 years and older
  • All sexes
  • No healthy volunteers
  • Adult, Older adult

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).

Who may be able to join

  • 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.

Who cannot join

  • None

Trial locations and contacts

6 sites in 1 country. Contact the study team or a site near you to ask about taking part.

Daniel Tobler, MD contact

+41 61 265 52 14

daniel.tobler@usb.ch

6 sites in 1 country

Switzerland6 sites, 6 recruiting

  • Basel University Hospital

    Basel, 4031

    Daniel Tobler, MD, +41 61 265 52 14, daniel.tobler@usb.ch

    Recruiting

  • Bern University Hospital Inselspital

    Bern, 3010

    Mathias Possner, PD. MD, +41 31 632 7859, mathias.possner@insel.ch

    Fabienne Schwitz, MD, +41 31 632 21 11 ext. 7679, fabienne.schwitz@insel.ch

    Recruiting

  • Hôpitaux Universitaires de Genève HUG

    Geneva, 1205

    Judith Bouchardy, MD, +41 22 372 75 31, judith.bouchardy@hcuge.ch

    Recruiting

  • Centre Hospitalier Universitaire Vaudois CHUV

    Lausanne, 1011

    Judith Bouchardy, MD, +41 79 55 65 467, judith.bouchardy@chuv.ch

    Tobias Rutz, MD, +41 79 55 670 33, tobias.rutz@chuv.ch

    Recruiting

  • Kantonsspital St.Gallen

    Sankt Gallen, 9007

    Dominik Stambach, MD, +41 71 494 10 51, dominik.stambach@kispisg.ch

    Recruiting

  • University Hospital Zurich

    Zurich, 8091

    Matthias Greutmann, MD, +41 44 255 38 83, Matthias.Greutmann@usz.ch

    Recruiting

Other trials in Switzerland

About this study

Official title: 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.

Read the 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.

Keywords
Adult, Registry, Grown-up congenital heart disease
Medical subject headings
Heart Defects, Congenital

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. Mortality

    Measured: 1 year and yearly up to 20 years

Secondary outcomes (1)

  1. Cardial complications

    Requiring in-patient hospitalisation, strokes, re-intervention

    Measured: 1 year and yearly up to 20 years

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted7 Oct 2014 (estimated)
  2. Study startSep 2013
  3. Primary completionDec 2033 (estimated)
  4. Study completionDec 2033 (estimated)

Resources

More details

For doctors and researchers: how the study is designed, who runs it, and its registry IDs.

Study design
Study type
Observational
Observational model
Cohort
Time perspective
Prospective
Enrolment
5,000 participants (estimated)
Target duration
20 Years
IDs, dates and publications
ClinicalTrials.gov ID
NCT02258724
Sponsor's protocol ID
AO_2026_00031
Acronym
SACHER
Status last verified
Apr 2026
First submitted
24 Sep 2014
Last updated
4 May 2026
Results posted
No
Data monitoring committee
No

Publications

  • 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.

    PubMed 21098444

  • 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.

    PubMed 12084585

  • 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.

    PubMed 22078432

  • 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.

    PubMed 30527151

Questions about this trial

What is this clinical trial studying?

An observational study of Congenital Heart Disease and Congenital Heart Defect, run by University Hospital, Basel, Switzerland at 6 sites in Switzerland.

The full registered description is in the About this study section and the official record.

Who may be eligible to take part?

The sponsor lists 2 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.

Is this clinical trial currently recruiting?

The record says: looking for participants now, as of the sponsor's last update on 4 May 2026. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 6 sites in Switzerland. Whether a site is taking part right now should be confirmed with that site. See every site.

What are the possible benefits and risks?

They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.

Are results available for this study?

This study is still under way. Results are not available in the source record yet.

How can a doctor refer a patient or contact the research team?

Contact Daniel Tobler, MD (+41 61 265 52 14, daniel.tobler@usb.ch), or a site near the patient. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

Mortality (time frame: 1 year and yearly up to 20 years). It is what the study was designed to measure, not a finding.

Where can I read the original study information?

On the ClinicalTrials.gov record for NCT02258724, which also lists 4 linked publications.

Does a listing mean the treatment is approved or proven to work?

No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.

How often is this information updated?

AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 4 May 2026.

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