RecruitingOBSERVATIONAL

Giessen Pulmonary Hypertension Registry and Biobank

This study, based in Giessen, Germany, is designed to learn more about people living with a condition called pulmonary hypertension, which is high blood pressure in the arteries leading to the lungs. Researchers want to understand what helps patients live longer without needing a lung transplant. They will collect information over time from people who have been diagnosed with pulmonary hypertension at their centre. This involves keeping a close eye on their health journey to find out what might improve their chances of staying well. It's an important step in improving care for everyone with this condition.

At a glance

Status

Recruiting

Sponsor

University of Giessen

Enrolment target

10,000

Start

01 Jul 1993

Estimated completion

15 Jan 2036

Pulmonary Hypertension

What is this study about?

This study is all about understanding pulmonary hypertension, a condition where the blood pressure in the arteries connecting your heart to your lungs is too high. This can make your heart work much harder.

The researchers in Giessen, Germany, are creating a special database, called a registry and biobank. They want to follow people with pulmonary hypertension over many years to see how long they live without needing a lung transplant. By carefully collecting health information and samples, they hope to discover what factors might help people with this condition live longer and healthier lives.

This kind of study is really important because it helps doctors and scientists gather a lot of information about a condition from many different people. This can lead to a better understanding of the disease, how it progresses, and what treatments or lifestyles might be most helpful in the long run. The information collected could improve care for everyone with pulmonary hypertension in the future.

Key takeaways

This study collects long-term data on pulmonary hypertension patients.
It aims to understand what helps people live longer without lung transplants.
Participation involves sharing medical information and blood samples (biobank).
It's open to adults diagnosed at the Giessen hospital.
The findings could improve future care for pulmonary hypertension.

Who may be eligible?

To be part of this study, you need to meet a couple of simple requirements.

Firstly, you must have been officially diagnosed with pulmonary hypertension using a specific test called 'right heart catheterisation' at the hospital in Giessen, Germany. This test is a common way to confirm the condition.

If you haven't given your permission to be part of the study, or if you had your diagnosis done elsewhere, you wouldn't be able to join. Other than that, the study is open to anyone of any age and all genders.

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.

Have I been diagnosed with pulmonary hypertension?
Was my diagnosis done using a 'right heart catheterisation' procedure?
Was this diagnosis carried out at the hospital in Giessen, Germany?
Am I willing to give my permission (informed consent) to take part?

Answer every question to see your result.

What does participation involve?

This study is a registry and biobank, which means it mainly involves collecting information and samples over time. It's not a study where you'd be given a new medication or treatment to try. Instead, the researchers will gather details about your health journey, your diagnosis, and how you're doing over the years. They will also collect blood samples (for the biobank) which are stored to help future research.

There aren't specific extra visits just for this study; instead, information will be collected during your regular check-ups at the Giessen hospital. The total duration of your involvement could be many years, as the researchers want to follow people long-term to understand the disease progression.

Potential risks and benefits

A potential benefit of taking part is contributing valuable information that could help improve the understanding and future treatment of pulmonary hypertension for many other patients. There are no direct personal health benefits expected from participating in this registry, as no new treatments are being given. The main risk involves the small discomfort and very low risks associated with routine blood tests for the biobank. You are free to withdraw from the study at any time without needing to give a reason, and this will not affect your medical care.

Locations (1)

Department of Intermal Medicine - Universities of Giessen and Marburg Lung Center
Verified postcode
Giessen, Germany· Recruiting

Common questions

What is pulmonary hypertension?

It's a serious condition where the blood pressure in the arteries leading from your heart to your lungs is too high.

Where is this study taking place?

This study is happening at a hospital in Giessen, Germany.

Will I get new medicine if I join?

No, this study is about collecting information over time, not giving new medicines or treatments.

Who can join this study?

Adults with pulmonary hypertension who were diagnosed at the Giessen hospital can join, if they give their permission.

How long will I be involved?

Your involvement could last for many years, as researchers want to follow people long-term.

How to find out more

Khodr Tello, MD

khodr.tello@innere.med.uni-giessen.de 0641/985-51250 Official trial record

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