What next?
What next?
About this study
Pulmonary fibrosis changes over time. Changes are often gradual, but sometimes someone affected by pulmonary fibrosis may experience a sudden change in their symptoms known as an exacerbation or acute exacerbation.
At diagnosis, it is not known if the changes will be gradual or faster than expected. There are currently no tests that can predict exacerbations, and the cause is often unclear.
The aim of the study is to ask people to report any deterioration in their symptoms, so these can be examined further with tests. This may help to identify specific changes in blood and sputum that can predict exacerbations or identify triggers.
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?
You will be asked to report any deterioration in your symptoms that are present for two or more days. The study team will aim to see you within 48 hours to collect samples, potentially treat and then follow up on any deterioration. You will also have a further follow up check at 1 week, 4 weeks and 12 weeks afterwards and will then be reviewed at 24 weeks.
Different samples will be collected including: blood, sputum, oral rinse, saliva, nasal brushings, throat swab to check for viruses and stool and urine samples. You will also have your lung function measured using a hand-held spirometry machine and regular follow up through face to face and virtual consultations.
If your condition is stable and you do not experience any deterioration in your symptoms, you will have samples taken and lung function every six months. However, this will be combined with your routine hospital visits, so that you do not require a separate visit to provide the research samples.
Summary of involvement
Participation for 2-3 years
Report decline in your health and you will be seen by the research team within 48 hours
Collection of different samples
Lung function tests
Regular follow-up
Can I take part?
You may be able to take part if you are over the age of 18 years and have a diagnosis of pulmonary fibrosis.
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.
People over the age of 18 years
Diagnosis of pulmonary fibrosis
People who have not had an acute exacerbation within the last 6 months
People who have not had antibiotic treatments for respiratory infections within the last 4 weeks
People who have other diseases that gives them a life expectancy of less than one year
People with sarcoidosis as the underlying cause of their fibrotic lung disease
People taking part in clinical trials who are receiving new drugs or therapies for lung fibrosis
What difference could taking part make?
Taking part in this study will help researcher to better understand exacerbations and respiratory deteriorations that happen for people with scarring lung diseases. It may help to identify biomarkers and risk factors that can predict the development of exacerbations or respiratory deteriorations.
Where does the study take place?
Study locations
Royal Brompton Hospital
Imperial College Healthcare NHS Trust
If you are not currently receiving care at a different hospital but able willing and able to travel, you can speak to your current healthcare team about being referred to the ILD Team at the Royal Brompton Hospital or Imperial College Healthcare NHS Trust. This will enable you to be assigned to a consultant and take part in research studies.
How to take part
People who would like to find out more about taking part can email r.ild@rbht.nhs.uk to express interest, or we would encourage you to discuss research opportunities with your healthcare team.
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.
r.ild@rbht.nhs.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