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 accessible system for data collection from a large number of patients, in order for different disease outcomes to be investigated.
Such outcomes include: clinical characteristics, the burden of disease, impact on quality of life and the disease course specific to the UK population. The longer term intention of the data collection is to provide quality information to clinicians and patients, thereby improving 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, including the patients age, gender, diagnosis and other health conditions in addition to ILD.
Diagnosis and clinical information will also be collected, such as how long an individual had symptoms prior to diagnosis, referral waiting times, the method of diagnosis, current care being received, and important 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.
The registry will hold information that can be used to identify you, such as name and date of birth. However, this information is only collected and used by your healthcare team and will not be used by anyone outside of this.
All information collected in the registry will be held confidentially.
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.
If you agree to take part, you will be able to withdraw from the registry at any time in the future and your care will not be affected.
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.
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
Informed and written consent must be obtained
You will not be able to participate if all of the inclusion criteria is not met.
What difference could taking part make?
The collection of data for people with ILD and information about the care provided within the UK, still remains sparse. The information collected within the registry will enable greater understanding of ILD, how patients are treated and what the patient outcomes are for survival. This will provide information that is able to inform where better care is required for people with ILD and ultimately improve quality of life.
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
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.
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