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Taking people in GermanyNo phase

Registry following adults with congenital heart disease awaiting heart transplant

Follows adults with congenital heart disease who are waiting for a heart transplant.

Plain-language title generated from the registry record
Registry title: The PAtients pResenTing With COngenital HeaRt DIseAse Register (ARTORIA-R)

Key facts

Where
Hamburg, GermanySee the site

Where in Germany

  • University Heart and Vascular Center HamburgHamburg, GermanyTaking people

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  4. What happens if I want to stop?
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Trial details

Who runs it
Universitätsklinikum Hamburg-Eppendorf
Trial code
NCT04848844
Record updated
1 July 2026
Original description
Advances in surgical and medical care have led to improved outcomes in patients with congenital heart disease (CHD). As a consequence, the majority of patients nowadays survives to adulthood (adults with CHD, that is, adult CHD [ACHD]) with good quality of life. Despite the surgical success, the morbidity and mortality of ACHD is higher than in the general population and is linked to the development of heart failure (HF) in adulthood.Read full original descriptionShow less

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

Advances in surgical and medical care have led to improved outcomes in patients with congenital heart disease (CHD). As a consequence, the majority of patients nowadays survives to adulthood (adults with CHD, that is, adult CHD [ACHD]) with good quality of life. Despite the surgical success, the morbidity and mortality of ACHD is higher than in the general population and is linked to the development of heart failure (HF) in adulthood.

HF occurs in approximately 25% of patients with ACHD, even in those patients in whom the congenital mal-formation has been corrected successfully in childhood. The time course and presentation are heterogeneous owing to variable congenital malformation and limitation of treatment options. ACHD with an anatomic right ventricle as the systemic ventricle (e.g., atrial switch operation in patients with transposition of the great arteries [TGAs]) and those with a functional single ventricle (e.g., Fontan circulation) appear to be at higher risk of developing HF. Young age at initial corrective surgery-often in the first 2 years of life-and lack of specific medical therapies can contribute to a high and early demand for heart transplantation in patients with ACHD.

Inclusion: The patient has to be listed as an adult transplant candidate in the country the data is obtained with an age ≥18 years; 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; Data is obtained from the first evaluation for listing or listing for heart-only or heart-combined organ transplantation; Transfer of anonymised data; The institution/organization agrees to the memorandum how data is managed, and scientific cooperation is planned between all institutions.

Exclusion: The patient is listed for a second heart transplantation (retransplantation).

ClinicalTrials.gov NCT04848844