What next?
What next?
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.
There are many different types of research. These studies might ask participants to test different treatments, devices, or complete questionnaires. Some studies may not require any involvement from people affected by PF, but instead look at cells in a lab environment, animal models, or utilise computer modelling.
A study involving people can be:
- Interventional – participants are given an active treatment decided by researchers. This could be a change in medication or lifestyle (e.g. exercise, diet, complementary wellbeing therapy, or symptom management). These are commonly known as clinical trials.
- Observational – participants are assessed for specific changes over time, but researchers do not alter their standard treatment or care (e.g. questionnaires to understand the impact of symptom, or patient registries that track trends in how disease affects people or the services that are provided).
There are 3 main phases of clinical trials:
- Phase 1 is the earliest stage of research, where there is often a focus on understanding if the treatment is safe or if it causes any side effects.
- Phase 2 still focuses on safety and side effects, but also tries to find out more about what is the best dose.
- Phase 3 often compares the new treatment to existing treatments or lookalike medications.
As drugs or interventions move into the different phases, the number of people taking part will increase. Not all studies will make it to the later phases, especially if the intervention is not found to be safe or effective in phase 1 and 2.
The recruitment aim is the number of people that researcher want to take part in the research study.
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 out more about other research opportunities visit our research finder main page.
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
Or
* Any sarcoidosis with pulmonary involvement, with or without fibrosis
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.
registry@brit-thoracic.org.ukThis study is supported by
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