Refreshing research priorities for pulmonary fibrosis (PF)
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
The aims of this study are to revisit and refresh the research priorities for PF identified five years ago in collaboration with all stakeholders (people with PF, caregivers, HCPs and researchers) to generate a ‘refreshed’ list of priorities reflecting what is most important to people with PF and their caregivers.
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?
In this first of three stages of the study, participation involves completing an online questionnaire. The questionnaire will ask you to:
- Review the current list of top 25 research priorities and indicate how relevant you feel these priorities are
- Add any additional priorities you feel are important but not currently on the list
- Identify what you feel are the top 3 research priorities amongst the list of 25.
Department: Respiratory Research@Alfred
Recruitment start date: Monday 13 May 2024
Recruitment end date: Sunday 30 June 2024
Contact person title: 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