Research
ILFA’s Commitment to Research
ILFA is committed to funding and supporting research into lung fibrosis and related conditions. The ILFA Board recognises that research into understanding, preventing, diagnosing and treating lung fibrosis is key in fighting this disease. Research also helps identify the causes of lung fibrosis and disease progression which can improve diagnosis and treatment and lead to better quality of life.
ILFA shares our research activities and findings with our members, the medical community, and the public. ILFA also shares important research updates from international studies and regularly invites clinical and scientific researchers to share their research with our members.
ILFA regularly conducts research with our members on topics impacting them. We then present our research data at national and international congresses. Our research is regularly published in medical journals.
ILFA collaborates with national and international stakeholders including healthcare professionals, industry, researchers and organisations (like the European Respiratory Society Task Force on Interstitial Lung Disease and the European Lung Foundation, Lung European Respiratory Network and others) on research.
Public, Patient and Carer Involvement in Research
Patient and public involvement (PPI) in research is defined by the National Institute for Health Research as “Research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”.
Public, patient, and carer Involvement in research is becoming increasingly important in research planning, development, and design, and is now considered best practice. Actively involving patients and the public in research activities ensures that the voice of patients and other interested parties is included to influence quality research. This results in research activities that are enhanced, better designed, with clearer and more relevant outcomes, and a faster uptake of new evidence.
ILFA is committed to PPI to ensure patients’ and carers’ perspectives and priorities influence our aims/mission, values, activities, advocacy, and research. ILFA set up a PPI Research Advisory Group in 2022 to inform our research activities, enhance collaborations with researchers and support and influence research relating to lung fibrosis. The group meets 2-3 per year and will discuss and evaluate research opportunities, proposals and funding applications .
If you have a research proposal relating to lung fibrosis and would like PPI input, please complete the ILFA PPI Application Form or email info@ilfa.ie.
Role of the PPI Advisory Group
The role of the PPI advisory group is to contribute their perspectives to ILFA’s research activities, to engage with research proposals. meaningfully and actively collaborate in the governance, priority setting and conduct of research, as well as in summarising, distributing, sharing results and knowledge.
Responsibilities
- The group will be asked to meet 2-3 times a year (virtual meetings to start with).
- A commitment to adequate preparation for meetings is required. Members will be asked to read and consider any documents sent in advance of the meeting.
- Members are asked to engage in active, meaningful, and respectful collaboration with other members of the group, ILFA Board Members and research investigators if necessary.
ILFA has prepared Terms of Reference for the PPI Advisory Group that are available on request. If you are interested in joining the PPI Advisory Group, please contact ILFA by the end of June 2022.
Email info@ilfa.ie or call 086 871 5264
ILFA’s Recent Research Activities and Achievements
- ILFA’s PPI Group supported Carita Bramhill and Professor Anne-Marie Brady of Trinity College Dublin’s study identifying the Unmet Needs of Pulmonary Fibrosis Patients published in the Journal of Respiratory Medicine (Volume 10).
- In 2023, ILFA presented a poster entitled “Impact of Pulmonary Fibrosis on the Lives of Patients and Carers in Ireland in 2022” at the European Respiratory Society International Congess in Milan.
- In 2022, ILFA conducted a survey to gain a quantitative understanding of patients’ access to specialist and multidisciplinary healthcare services for pulmonary fibrosis (PF) in Ireland, and to understand patients’ preferences regarding models of service delivery. The research was published in the Irish Medical Journal. Click the link below to read the article
Access to Specialist and Multidisciplinary Healthcare for Pulmonary Fibrosis - In 2021, ILFA’s research findings from a survey conducted during the first wave of Covid 19 were published in the Irish Medical Journal. Click the links below to read the articles
Perspectives of Interstitial Lung Disease Healthcare Professionals during Covid19Perspectives of Interstitial Lung Disease Patients and Carers during COVID-19 - In 2022, ILFA collaborated with Dr Vikram Niranjan (Assistant Professor in Public Health. University College Dublin School of Public Health, Physiotherapy and Sports Science) to conduct reseach into Dancing for Pulmonary Fibrosis. This research was supported with a grant from the Irish Research Council.
A number of research outputs were achieved including
(1) Dancing for Health and Wellbeing: A Feasibility Study of Examining Health Impacts of Online Dancing among Pulmonary Fibrosis Patients
(2) A poster entitled “Wellbeing via dance caught my mind’: A qualitative study exploring health impacts of online dance classes among patients with pulmonary fibrosis” was presented at the Irish Thoracic Society Annual Meeting on 2nd December 2022. - In 2021, ILFA collaborated with Dr Roison Cahalan (Faculty of Education and Health Sciences, University of Limerick) to conduct research into singing for lung fobrosis.
SingStrong – singing for better lung health in pulmonary fibrosis: A feasibility study - ILFA’s World Café on Palliative care and Planning for the Future took place in June 2018. A team of healthcare professionals, patients and carers collaborated to produce a manuscript describing the methodology and findings and this was published in the British Medical Journal Supportive & Palliative Care in October 2021. Click the link below to read the article.
Fibrotic interstitial lung disease – palliative care needs: a World-Café qualitative study - ILFA became a member of Health Research Charities Ireland in September 2021.
- In 2019, ILFA invited submissions for a share of €30,000 research funding into lung fibrosis in Ireland. Five projects were successful. Funding was to be awarded in stages on commencement of the research project. Unfortunately, the emergence of the Covid19 pandemic impacted significantly on research activities in 2020-2021 and some projects are still to commence. Three of the funded projects involve laboratory-based research with clinical applications, 1 project will focus on remote heath monitoring of lung fibrosis patients using an app and Bluetooth technology and is due to start shortly and funding was awarded to the Irish Thoracic Society’s Idiopathic Pulmonary Fibrosis registry.
- In 2021, ILFA conducted a patient survey to understand the challanges faced by lung fibrosis patients accessing healthcare services and supports in Ireland. ILFA_Member_Service_Needs_Survey 2021
The findings of this survey will be published soon.
Research Expressions of Interest
The Irish Lung Fibrosis Association welcomes expressions of interest that are in line with its mission and that deliver impactful outcomes for pulmonary fibrosis with respect to ILFA’s core pillars of research, education, support, and advocacy.
Projects including research on basic science, clinical research, behavioural sciences, epidemiology, treatment pathways, health economics, and patient-reported outcomes relevant to pulmonary fibrosis will be considered.
