The PAtients pResenTing With COngenital HeaRt DIseAse Register (ARTORIA-R)
The ARTORIA-R study is like a large, international registry gathering information on adults with congenital heart disease (CHD) who are being considered for or have received a heart transplant. Many people born with heart conditions now live long, healthy lives thanks to medical advances. However, some still develop heart failure, which can lead to needing a transplant. This study looks back at past patient data from 1989 to 2024 and will continue to collect new information each year. By understanding more about these patients, including their specific heart problems and past treatments, doctors hope to improve care and outcomes for adults with CHD who need a heart transplant.
At a glance
What is this study about?
This study, called ARTORIA-R, is a big international project looking at adults who were born with a heart condition (doctors call this congenital heart disease or CHD) and who have either been assessed for a heart transplant or have already had one. You might know that children born with heart problems often have excellent treatment and live full lives. However, for some adults with CHD, their heart can become weaker over time, a condition known as heart failure. When this happens, a heart transplant might become necessary.
The ARTORIA-R study wants to learn more about these patients. Researchers are gathering information from hospitals in 18 different countries, looking at records from 1989 up to today, and will keep adding new information every year. They want to understand why some adults with CHD develop heart failure, what types of heart conditions put them more at risk, and how well they do after a transplant. They are particularly interested in patients whose hearts have a different structure, such as those with a "systemic right ventricle" or a "single ventricle."
By collecting detailed information, such as the specific type of heart condition, previous surgeries, and overall health before and after a transplant, the study aims to create a clearer picture. This will help doctors understand common patterns, identify risk factors, and ultimately improve the care and treatment options for other adults with similar heart conditions in the future.
Key takeaways
- This is an international study focusing on adults with heart conditions they were born with (CHD).
- It collects anonymous information about patients who are considered for or have had a heart transplant.
- The goal is to understand why some adults with CHD need transplants and to improve future care.
- Data includes details about their specific heart condition, past treatments, and transplant journey.
- No direct patient participation is required; it uses existing medical records.
- Your identity is protected as all shared data is anonymous.
Who may be eligible?
This study is specifically looking for information about adults.
To be included, the information must be about an adult (aged 18 or older) who has been put on a list to receive a heart transplant, or is being considered for one, in the country where their data is collected. They must have been born with a heart condition (congenital heart defect) or have certain inherited weak heart muscle conditions, which are often grouped with CHD.
Also, the hospital or organisation sharing the information must agree to how it will be used and that the patient's identity will be kept private. Information about patients undergoing a second heart transplant won't be included.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Are you an adult (18 years or older)?
- Do you have a heart condition you were born with (congenital heart disease) or certain inherited heart muscle problems?
- Were you considered for a heart transplant, or have you had one?
- Has your local hospital agreed to share anonymised patient data with the study?
What does participation involve?
This study is gathering information from existing patient records, so you wouldn't directly "take part" in the traditional sense of having extra appointments or treatments. Instead, if your medical centre is involved, they might share anonymised information from your past medical history with the study. Researchers would look at details like your heart condition, past treatments, and transplant process from your hospital files. This means your personal identity would be protected, and you wouldn't need to do anything extra. There are no additional visits, assessments, medications, or specific follow-ups required by this study for patients.
Potential risks and benefits
Locations (1)
- University Heart and Vascular Center HamburgVerified postcodeHamburg, Germany· Recruiting
Common questions
What is 'congenital heart disease'?
It means a heart condition that someone is born with.
Will my doctors know I'm part of this study?
Your hospital's medical team might contribute your anonymised health data to the registry if they are participating.
Will my personal details be shared?
No, all information shared with the study is anonymised, meaning your name and direct identification details are removed.
How long will this study last?
The study is looking back at data from 1989 and plans to continue collecting new information annually into the future.
What does 'heart failure' mean in this context?
It means the heart isn't pumping blood as well as it should, leading to symptoms like tiredness or breathlessness.
How to find out more
Christoph Sinning, MD
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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