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Global registry aims to unlock clues for heart transplant success in adults born with heart defects

NCT ID NCT04848844

Knowledge-focused Sponsor: Universitätsklinikum Hamburg-Eppendorf Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jul 01, 2026 · Last updated Jul 02, 2026 · Updated 1 time

Summary

This registry tracks 2,000 adults with congenital heart disease who are on the waiting list for a heart or heart-lung transplant. The goal is to understand why some patients get worse or die while waiting, while others improve enough to be removed from the list. By collecting data from around the world, researchers hope to identify factors that could lead to better outcomes for this growing patient population.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this registry could identify key factors that improve survival and reduce complications for adults with congenital heart disease awaiting transplantation.
What could go wrong
As an observational registry, it cannot prove cause and effect. Results may not apply to all patient groups or lead to immediate changes in care.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 2,000 people

The number the study aims to enrol. It can still change while the study runs.

Started

Sep 2020

Expected to finish

Jul 2030

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

The PAtients pResenTing with COngenital HeaRt DIseAse Register (ARTORIA-R) will collect data from patients with ACHD evaluated or listed for heart or heart-combined organ transplantation from 19 countries in Europe and the Asia/Pacific region. We plan retrospective collection of data from 1989 - 2024 and will include patients prospectively. The primary outcome is the combined endpoint of delisting due to clinical worsening or death on the waiting list. The secondary outcome is delisting due to clinical improvement while on the waiting list.

Ages

18 years and older

Sex

Anyone

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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)

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Conditions

The condition(s) this trial relates to.

Arrhythmias, Cardiac arrhythmogenic right ventricular cardiomyopathy cardiac rhythm disease cardiac ventricle disorder congenital heart disease heart failure hypertrophic cardiomyopathy non-compaction cardiomyopathy Ventricular Dysfunction

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Arrythmia Congenital heart disease Heart failure Transplant; complication, failure Ventricular dysfunction

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    1 site. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • University Heart and Vascular Center Hamburg

    RECRUITING

    Hamburg, Free and Hanseatic City of Hamburg, 20246, Germany

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