Registry for adults with congenital heart disease and heart transplantation
Official title: The PAtients pResenTing With COngenital HeaRt DIseAse Register (ARTORIA-R): A Global Register to Investigate Factors Associated With Morbidity and Mortality in Adult Patients With Congenital Heart Disease (ACHD) on the Waiting List for Heart or Heart/Lung Transplantation
Run by Universitätsklinikum Hamburg-Eppendorf · NCT04848844 · Data updated 2026-11-12
This study is collecting information about adults with congenital heart disease who may need a heart transplant to better understand their experiences and outcomes.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years and up |
| Sex | All |
| Enrollment | 2000 (estimated) |
| Sponsor | Universitätsklinikum Hamburg-Eppendorf Academic / other |
| Locations | 1 site (Hamburg, Free and Hanseatic City of Hamburg) |
| Status | Recruiting |
| Started | September 2, 2020 |
| Main results expected | July 30, 2030 |
| Study ends | July 30, 2030 |
| Registry record updated | July 1, 2026 |
| Trial ID | NCT04848844 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this registry are adults aged 18 and older who are listed as transplant candidates with congenital heart defects or inherited cardiomyopathies.
✕Probably not a fit
Patients who are listed for a second heart transplantation will not benefit from this registry.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
The ARTORIA-R project is an international observational registry that collects both retrospective and prospective data on adults with congenital heart disease (ACHD) who are candidates for heart transplantation. It aims to gather comprehensive information on patient profiles, listing dynamics, and post-transplant outcomes across 18 countries from 1989 to 2024. Institutions are invited to contribute anonymized data, ensuring ethical compliance and scientific collaboration. The registry seeks to enhance understanding of the complexities and outcomes associated with ACHD and heart failure.
Why it matters
Potential benefit: If successful, this registry could improve patient outcomes by providing valuable insights into the management and treatment of adults with congenital heart disease.
How similar studies have gone: Other similar registries have shown success in improving patient care and outcomes in congenital heart disease, indicating that this approach is promising.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: 1. The patient has to be listed as an adult transplant candidate in the country the data is obtained with an age ≥18 years 2. The patient has to have a congenital heart defect or an inherited cardiomyopathy (specific; hypertrophic cardiomyopathy, arrhythmogenic right ventricular cardiomyopathy or non-compaction cardiomyopathy) which is often included into the category ACHD 3. Data is obtained from the first evaluation for listing or listing for heart-only or heart-combined organ transplantation 4. Transfer of anonymised data 5. The institution/organization agrees to the memorandum how data is managed, and scientific cooperation is planned between all institutions Exclusion Criteria: a. The patient is listed for a second heart transplantation (retransplantation)
Where it's running
-
University Heart and Vascular Center Hamburg
Hamburg, Free and Hanseatic City of Hamburg, Germany Recruiting
Study contacts
- Principal investigator: Christoph Sinning, MF — University Heart & Vascular Center Hamburg
- Study coordinator: Christoph Sinning, MD
- Email: c.sinning@uke.de
- Phone: 004915222817675
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.