Active not recruitingOBSERVATIONAL

Clinical Course of Interstitial Lung Diseases: European IPF Registry and Biobank

This study is a Europe-wide project collecting information and biological samples from people with rare lung conditions called Interstitial Lung Diseases (ILDs), especially Idiopathic Pulmonary Fibrosis (IPF). IPF is a serious lung disease where the lungs become scarred and stiff. By gathering lots of information over time from people with IPF and similar conditions, researchers hope to understand how these diseases progress and what causes them. This understanding is key to developing better ways to treat these conditions and improve the lives of patients across Europe. If you have one of these conditions, your doctor might tell you more about how you could participate.

At a glance

Status

Active not recruiting

Sponsor

Andreas Guenther

Enrolment target

2,000

Start

01 Sep 2009

Estimated completion

01 Jan 2040

Idiopathic Pulmonary Fibrosis Idiopathic Interstitial Pneumonia Interstitial Lung Diseases Diffuse Parenchymal Lung Diseases

What is this study about?

Imagine a big, ongoing record book about rare lung conditions, especially one called Idiopathic Pulmonary Fibrosis (IPF). That's essentially what this European registry is. IPF is a serious illness where your lungs become scarred and stiff, making it hard to breathe. There are other similar conditions, sometimes grouped as Interstitial Lung Diseases (ILDs), which also scar the lungs.

The main idea behind this project is to collect lots of detailed information – like medical history and how the disease changes over time – from many patients across Europe. This large collection of information, along with 'biomaterial samples' such as blood or tissue (if patients agree), helps scientists get a clearer picture of these complex diseases. Think of it like putting together a giant jigsaw puzzle; the more pieces they have, the better they can see the whole picture.

By carefully studying all this data, researchers hope to learn more about how these lung conditions start, why they get worse in some people, and what might cause them. This deeper understanding is really important because it lays the groundwork for finding new and more effective treatments. The goal is to improve the lives of people living with these challenging lung diseases.

Key takeaways

This is a European study looking at rare lung conditions like IPF.
It collects medical information and samples from patients to learn more about these diseases.
The goal is to help find better treatments in the future.
You won't receive new medicines; your usual care continues.
Participation is voluntary, and you can withdraw at any time.

Who may be eligible?

To be part of this important study, you need to be an adult, aged 18 or over. This study is open to both men and women.

The most important step is that you must understand what the study involves and agree to take part. This agreement is shown by you signing an 'informed consent' form. This ensures you're happy to share your information and samples for research.

If you don't sign this consent form, or if you decide it's not for you, then you wouldn't be able to join the study. It's completely your choice.

Quick self-check

Are you 18 years old or older?
Do you have an Interstitial Lung Disease (ILD), like Idiopathic Pulmonary Fibrosis (IPF)?
Are you willing to understand and sign a consent form?
Are you comfortable with researchers using your anonymous medical information for study purposes?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

This study is an 'observational' study, which means researchers will collect information and, if you agree, samples during your regular medical appointments. You won't be given any new or experimental medications as part of this study. You will continue to receive your usual medical care from your doctor.

If you choose to participate, the main things involved are: allowing researchers to collect details from your medical records (like test results and how your condition changes over time) and, if you give permission, providing biological samples such as blood or tissue. These samples would typically be collected during your routine clinic visits or procedures you are already undergoing. There are no extra visits specifically for the study.

The study aims to follow participants over a long period to understand the progression of these conditions. The total duration of your participation would depend on how long you remain under the care of the participating clinic, but you are always free to withdraw your consent at any time without affecting your medical care.

Potential risks and benefits

A potential benefit of joining this registry is knowing that your information is contributing to a greater understanding of these rare lung diseases. This could help researchers discover new treatments and improve care for future patients. As this is an observational study, there are very few direct risks. Any samples collected would typically be taken during procedures you would already be having, so there aren't additional physical risks from the sampling itself. The main risk is to your privacy, but strict measures are in place to keep your personal information confidential. Remember, you have the right to withdraw from the study at any time, for any reason, without it affecting your medical care.

Locations (7)

Medizinische Universität Wien
Vienna, Austria
Centre Hospitalier Universitaire Dijon
Dijon, France
Hopital Bichat Paris
Paris, France
Andreas Guenther
Giessen, Germany
Lungenfachklinik Waldhof Elgershausen
Greifenstein, Germany
Università degli Studi di Catania
Catania, Italy
Royal Brompton Hospital
London, United Kingdom

Common questions

What is Idiopathic Pulmonary Fibrosis (IPF)?

IPF is a serious lung condition where the lung tissue becomes scarred and stiff over time, making it harder to breathe. 'Idiopathic' means the cause is unknown.

Is this study giving out new medicines?

No, this is an observational study. You will continue to receive your usual medical care, and no new medicines or treatments are given as part of the study.

What kind of information will be collected?

Researchers will collect information from your medical records, like your symptoms, test results, and how your lung condition changes over time.

Will I have to have extra tests or appointments?

Generally, no. The study uses information from your routine medical care. If samples are collected, it's usually during tests or procedures you would already be having.

Can I stop being part of the study once I've joined?

Yes, absolutely. You can withdraw your consent and stop participating at any time, and it will not affect your medical care.