Refreshing research priorities for pulmonary fibrosis (PF) – final stage – identifying updated top 10
Subject area of study: Pulmonary fibrosis, research priorities
Study title: Refreshing the research priorities for pulmonary fibrosis study
Brief outline
Pulmonary fibrosis (PF) is a commonly used umbrella term for the large proportion of interstitial lung diseases (ILDs) that are characterised by scarring of the lung parenchyma. Proven treatments for PF are limited. Antifibrotic therapies (nintedanib and pirfenidone) slow the decline in lung function in people with IPF and more recent findings suggest a similar role for nintedanib in people with other types of progressive PF. However, while antifibrotic therapies slow down (rather than prevent) the decline in lung function, they have limited benefits on symptoms and health-related quality of life. Therefore, most people with PF continue to experience a high symptom burden, a progressive decline in lung function and a reduced physical capacity that negatively impacts their physical, psychological and social well-being.
In 2019, we undertook a study that identified the top 10 research questions for pulmonary fibrosis based on the views of people living with the disease, caregivers, healthcare professionals and researchers. The study found that research aimed at prevention, development of interventions to improve lung function and reducing the symptom burden were most important.
Five years on, we are looking to review and refresh the top research questions to check if they are still the most important questions that people with the disease and their caregivers feel research should be addressing.
The study has been approved by Monash University Human Research Ethics Committee (#42478)
Aims of this study
This final stage of the study involves ranking of the refreshed list of 31 research priorities to identify the updated list of top 10 priorities for PF.
Who is eligible to participate?
- A person living with pulmonary fibrosis
- A caregiver/family member or friend of a person living with pulmonary fibrosis
- A healthcare professional or researcher involved with pulmonary fibrosis
What does the study involve?
This final stage of the study involves ranking the 10 most important research questions that you feel should be addressed by research from a total of 31 questions identified from the initial questionnaire and then discussed during the face-to-face workshop in July 2024.
To do this you will be asked to review the refreshed list of 31 research priorities and identify your top 10 by numbering them from 1 (most important) to 10 (not as important).
Other details
- Department: Respiratory Research@Alfred
- Recruitment start date: Monday 02 September 2024
- Recruitment end date: Sunday 03 November 2024
- Contact person: Dr Gabriella Tikellis
- Contact email: gabriella.tikellis@monash.edu
- Contact phone number: (03) 9903 0948
- Respiratory Care group Website
- Ethics Committee Project Number: 42478
- Do you have advertising approval?: Yes
- Approved by: Monash University Human Research Ethics Committee