eurIPFreg: European Idiopathic Pulmonary Fibrosis Registry and Biobank investigating clinical course of disease

Upcoming study
Expected to open September 2009
This study is currently recruiting
Expected to close January 2025
This study is closed
This study closed in January 2025
We will update this page with study results when available.
Information on study results are included below
This study closed in January 2025

What next?

Original listing:

What next?

Original listing:

About this study

The European IPF Registry (eurIPFreg) is one of the largest databases in Europe for the long term collection of information about people with IPF. This also includes information collected from other patient groups with different lung diseases, in order to act as comparisons.

The aim of the register if to describe and gain understanding of what happens to people with IPF over time, and if there are any striking points about patient disease journey.

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What is involved?

You will be required to complete questionnaires to identify the impact of the disease on quality of life, infections, healthcare usage and comorbidities. Information will be collected and your clinical data will be recorded at every routine hospital visit. This may include lung function tests and blood tests results.

Summary of involvement

Lung function tests

Blood tests

Answering questionnaires

(each completed at routine hospital appointments)

Can I take part?

You may be able to take part if you have a diagnosis of an Interstitial Lung Disease, or are a healthy volunteer, and are able to provide informed consent.

In research studies, there are lots of different reasons why you may or may not be able to take part. These are known as inclusion and exclusion criteria (see list below). Only the clinical trial team will be able to fully determine whether you are able to take part in the study. You can withdraw at any point.

If you are not able to take part in this research study, there may be other opportunities for you to take part in different studies.

To find our more about other research opportunities visit our research finder main page.

You may be able to join this study if all of these apply:

Informed consent signed

18 years and over

Diagnosis of ILD or a healthy volunteer

You will not be able to join the study of any of the following applies:

No informed consent signed

What difference could taking part make?

Taking part in this study will allow researchers to identify risk factors that are associated with the progression of disease and gain understanding of how different samples taken from patients could provide the basis for future research directions.

Ultimately, taking part in research may help people with pulmonary fibrosis in the future and gain insight for to increase the chances of living better with the disease and finding better treatment options.

Where does the study take place?

Study locations

Royal Brompton Hospital, London

How to take part

Please speak to your healthcare team about taking part in the study. You can also find additional information in the following link:

European ILD Registry and Biobank (pulmonary-fibrosis.net)

Further information

The summary on this page provides information about an opportunity to participate in research. More detailed information about the study can be found via the following the links and through contacting the research team.

If you have any questions about this research study, please speak to your medical team and contact the researchers directly via:

A.wells@rbht.nhs.uk

This study is supported by

Andreas Guenther, University of Giessen
Study ID number:
NCT02951416

APF does not endorse or recommend any specific study. All responsibility for the study remains with the sponsors and investigators.

Every effort is made to keep these details up to date. If you are aware of any inaccuracies, please email research@actionpf.org