RecruitingOBSERVATIONAL

COMPERA / COMPERA-KIDS

The COMPERA study is a long-running project gathering important information about pulmonary hypertension (PH), a serious lung condition. It's not a trial testing a new drug, but rather a registry that keeps track of how patients with PH, including children (COMPERA-KIDS), are doing with the treatments they already receive in regular care. The main goal is to see which treatments work best for different people and how well patients manage their condition over time. By collecting data from many hospitals across the UK, COMPERA helps doctors compare different approaches, learn from each other, and improve care based on real-world results. This helps ensure that the specific drug treatments for PH are as effective as possible for everyone.

At a glance

Status

Recruiting

Sponsor

Technische Universität Dresden

Enrolment target

14,000

Start

01 Jul 2007

Estimated completion

31 Dec 2026

Pulmonary Arterial Hypertension (PAH)Pulmonary Hypertension (PH)

What is this study about?

The COMPERA study, including COMPERA-KIDS for children, is a very important ongoing project that helps doctors and researchers understand more about pulmonary hypertension (PH) and pulmonary arterial hypertension (PAH). These are serious conditions where the blood pressure in the arteries leading to the lungs becomes too high, making the heart work much harder and leading to symptoms like breathlessness and tiredness.

Unlike studies that test brand new medicines, COMPERA is a 'registry.' This means it collects information about how patients are doing with the treatments they are *already receiving* as part of their usual care. Since 2007, it has been gathering details on people starting treatment for PH/PAH, and since 2013, it has also included children. By looking at a large number of patients across many hospitals, the study can spot trends, see which treatments work best for different types of PH, and understand how people's conditions change over time.

The findings from COMPERA help doctors improve the way PH is treated in day-to-day healthcare. For example, it helps hospitals compare their results with others, making sure everyone is following the best guidelines. Ultimately, this information helps to improve the specific drug therapies available and ensures patients receive the most effective and up-to-date care for their condition.

Key takeaways

COMPERA is a registry, not a drug trial.
It helps doctors understand and improve PH treatments.
Includes both adults and children with pulmonary hypertension.
Collects data from routine medical care, no extra tests.
Aims to optimize existing drug therapies for PH/PAH.

Who may be eligible?

The COMPERA study is open to a wide range of patients, including all age groups from one week old upwards. To join, you would need to have pulmonary hypertension (PH) or pulmonary arterial hypertension (PAH). This includes various types, such as PH linked to connective tissue diseases, congenital heart conditions, HIV, or liver problems. It also includes PH caused by blood clots in the lungs (CTEPH) or PH related to heart or lung diseases.

Crucially, you would generally need to be starting a specific new drug treatment for PH or PAH within the last three months. These treatments might include medicines like endothelin receptor antagonists, phosphodiesterase-5 inhibitors, soluble guanylate cyclase stimulators, or prostacyclins, which can be given alone or in combination. You would also need to provide written consent to take part.

There are a couple of exceptions to the three-month rule for starting new treatment: if you have PAH linked to a congenital heart defect, you might be able to join even if you're already on a stable treatment, or if you have severe congenital heart disease (like Eisenmenger syndrome), you might be included even if you're not on specific PAH drugs.

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.

Do you have pulmonary hypertension (PH) or pulmonary arterial hypertension (PAH)?
Have you recently (within 3 months) started new specific PH/PAH drug treatment?
Are you able to provide written consent to take part?
If you have PAH linked to a congenital heart condition, are you already on stable treatment or have severe congenital heart disease like Eisenmenger syndrome?

Answer every question to see your result.

What does participation involve?

If you decide to take part in the COMPERA study, you won't need extra hospital visits or different health assessments than what you normally have. This is because COMPERA is a registry, which means it simply collects information from your regular medical appointments and treatments. Your doctors will share details about your diagnosis, the treatments you're receiving, how you're responding to them, and your overall health progress.

You won't be given any new or experimental medications as part of this study; you'll continue with the PH or PAH treatments your doctor prescribes for your condition. The study aims to follow patients long-term to understand how their condition and treatment evolve over many years. Your participation involves allowing your medical information to be securely collected and analysed, helping to improve care for others with PH and PAH.

Potential risks and benefits

Participating in COMPERA involves very low risk, as it collects information from your routine care and doesn't involve any changes to your treatment or extra procedures. The potential benefits are for future patients rather than directly for you, as the information gathered helps improve overall understanding and treatment of PH in the long term. You have the right to withdraw from the study at any time without explaining why, and this will not affect the medical care you receive.

Locations (7)

Dept. of Pneumology, University
Verified postcode
Leuven, Belgium· Recruiting
DRK-Klinikum Köpenick
Verified postcode
Berlin, Germany· Recruiting
Lung Centre, University of Giessen
Verified postcode
Giessen, Germany· Recruiting
Department of Pulmology; Hannover Medical School
Verified postcode
Hanover, Germany· Recruiting
German Heart Centre
Verified postcode
Munich, Germany· Recruiting
Department of Cardiovascular and Respiratory Sciences, University La Sapienza
Verified postcode
Rome, Italy· Recruiting
Dept. for Rheumatology, University Hospital
Verified postcode
Zurich, Switzerland· Recruiting

Common questions

What is pulmonary hypertension?

It's a serious lung condition where blood pressure in the arteries to your lungs is too high, making your heart work harder.

Is this a drug trial?

No, it's a 'registry' that collects information on how existing treatments work in real life for PH/PAH patients.

Who can join the study?

Children and adults with different types of PH/PAH, usually if they've recently started specific treatments.

Will I get new medicines?

No, you'll continue with the PH/PAH medicines your doctor prescribes for your usual care.

How long does participation last?

The study collects information long-term, from your regular appointments, to see how people do over time.

How to find out more

David Pittrow, MD, PhD

david.pittrow@mailbox.tu-dresden.de +498152 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.