What next?
What next?
About this study
The healthcare teams who look after people with pulmonary fibrosis should offer a personalised care plan to each person affected by the disease. However, it is not known which health aspects are the most important to people affected by pulmonary fibrosis.
A team of researchers have made a list of potential important health aspects. This list was made by gathering information from the research literature, healthcare professionals and patients. The list is currently too long to be of practical use within clinical care. Obtaining consensus on the most important health aspects (core outcome set) to use in clinical care is vital.
This study aims to shorten the list of the most important health aspects with the help of patients and caregivers. This will make it easier to use and implement within standard care.
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?
Over about four months, participant fill out an online questionnaire three times. In this questionnaire, the participants indicate which health aspects are most important to include in clinical care.
Summary of involvement
3 questionnaires completed online over 4 months
Can I take part?
The researchers are looking for patients or caregivers who are 'experts in pulmonary fibrosis care' and can act as representatives for everyone affected by pulmonary fibrosis. This means you will have experience of living with the disease or caring for someone with pulmonary fibrosis.
The researchers are looking for 30 of each of the following groups:
- people with pulmonary fibrosis
- caregivers
- pulmonologists
- nurses
- allied healthcare professionals
You may be able to take part if you fit into one of these categories. If you are a healthcare professional, you must work directly with people affected by 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 out more about other research opportunities visit our research finder main page.
You must be a patient with pulmonary fibrosis, informal caregiver of a patient with pulmonary fibrosis, or healthcare professional of patients with pulmonary fibrosis.
Patients after lung transplantation or participants living outside Europe are not eligible to take part.
What difference could taking part make?
The views of patients and their caregivers are crucial to include in the development of the list of the most important health aspects that should be used in clinical care. There is no personal compensation provided for participating, but the results may help to inform clinical care.
Where does the study take place?
Study locations
This study is a European initiative aimed at improving care for patients with IPF/PPF in Europe.
Therefore, participants must live (and receive their care) in Europe.
This study takes place online.
Participation is possible in the following languages: English, German, Hungarian, Spanish or Turkish.
How to take part
You can express your interest in taking part by filling out the form on the COCOS-IPF website. The researchers will be in touch to follow up about the study. You can also contact the researchers directly via email: sofie.breuls@kuleuven.be
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.
sofie.breuls@kuleuven.beThis 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