What next?
What next?
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.
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 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.
Informed consent signed
18 years and over
Diagnosis of ILD or a healthy volunteer
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:
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.
A.wells@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