BTS Interstitial Lung Disease Registry

Upcoming study
Expected to open February 2013
This study is currently recruiting
Expected to close
This study is closed
This study closed in
We will update this page with study results when available.
Information on study results are included below
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Ask your healthcare team about taking part in research

What next?

Original listing:

What next?

Original listing:

About this study

The BTS Interstitial Lung Disease Registry is a national project where data for all fibrosing ILD, including IPF and sarcoidosis is collected into an online system. Patient registries are collections of healthcare data which are for people with specific diseases or conditions.

The aim is to provide an easy system for data collection from a large number of people affected by PF to learn about the disease.

The registry collects information about clinical characteristics, the burden of disease, impact on quality of life and the disease course specific to the UK population. The longer term aims are to provide quality information to clinicians and researchers to help improve guidelines and management of disease.


What is involved?

Information is submitted by participating centres and hospitals on behalf of patients. The registry will include collecting demographic information, age, gender, diagnosis and other health conditions in addition to ILD.

Diagnosis and clinical information will be collected, such duration of symptoms before diagnosis, referral waiting times, the method of diagnosis, current care being received, and information about the number of patients taking part in other research.

Follow-up data will be recorded and entered onto the registry at each routine follow-up hospital appointment. This could include height and weight, lung function test results, other tests such as x-rays, blood tests and culture, the drugs and treatments that are being received.

Summary of involvement

Information collected from routine hospital appointments will be added to the register

Your healthcare team will be responsible for uploading and maintaining your record on the registry

Can I take part?

You may be able to take part if you receive care from one of the participating centres and have a diagnosis of ILD.

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 research 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:

Initially first seen within a hospital clinic at a participating centre after 1st January 2013

Diagnosis of either:

* Any ILD with evidence of fibrosis, including IPF


* Any sarcoidosis with pulmonary involvement, with or without fibrosis

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

You will not be able to participate if all of the inclusion criteria is not met.

What difference could taking part make?

The information collected within the registry will help to improve understanding of ILD, how patients are treated and what the patient outcomes are for survival.

Where does the study take place?

Study locations

There are currently over 70 participating site across England, Scotland, Wales and Northern Ireland.

How to take part

Please speak to your healthcare team to determine if the hospital that are responsible for your care are a participating centre.

If the hospital is not a participating centre, more information can be found on how hospital sites can join the registry is available on the BTS ILD Registry web page.

Further information

This page is a summary which 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.

This study is supported by

British Thoracic Society
Study ID number: *

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