Who We Are
Our Sponsor
Founded as the national training body for surgery in Ireland, RCSI has been at the forefront of healthcare education since its establishment in 1784.
The RCSI achieved Ireland’s highest position in the Times Higher Education (THE) University Impact Rankings 2021, coming joint second in the world for ‘Good Health and Wellbeing’ from a total of 871 institutions. THE University Impact Rankings recognise universities around the world for their social and economic impact based on the United Nations’ 17 Sustainable Development Goals (SDGs).
Meet The Team
ENHANCE is a real-world study examining clinical outcomes of people with CF (PwCF) in this new CF care era. This study will involve children with CF across 13 paediatric CF centres in Ireland and the UK. We will be examining a wide range of well-established tests in the people participating in the study, as well as some newer, more sensitive tests looking at how the health and quality of life in people with CF changes over time.
Core Team
Paul McNally, MD – Lead PI
Paul is a consultant in paediatric respiratory medicine and Director of Research and Innovation at Children’s Health Ireland. He is an associate Professor of Paediatrics at RCSI in Dublin . Paul’s main research interest is early CF lung disease and response to CF modulator therapies. Paul is lead investigator for the RECOVER study.
Teams in Ireland
Meet The Team
Teams in the UK
Meet The Team
Our Collaborators
Meet The Team
Public & Patient Involvement (PPI)
What is PPI?
Public and Patient Involvement (PPI) in the research process ensures that research is meaningful and of benefit to those directly and indirectly affected by CF. PPI creates a partnership between people affected by CF and researchers. It is more than a tokenistic gesture to comply with policy, but can provide a real and substantial benefit to all involved. PPI can:
- Promote a sense of empowerment and value among patients
- Enhance patient trust in researchers
- Improve researchers’ insight into their own research area
- Help researchers identify barriers and come up with solutions to research
- Increase trust and acceptability in the patient community of research findings
- Improve the dialogue between healthcare professionals and patients
Why is PPI important?
PPI is crucial in translational research because in helps ensure that the real-life experiences of patients are being considered when decisions are being made about what research to do and how research should be conducted. Historically the CF community has had strong patient engagement with research, and this has been heightened in recent times with the introduction of modulator treatments. Among our various aims, ENHANCE is designed to specifically answer a range of important questions that have been raised by people with CF and the wider CF community (click here to read more about these specific questions).
The ENHANCE PPI team have been involved throughout the study lead in period and will be involved right through till the end of the study.
We members of the PPI group from a similar study (RECOVER) why should others get involved in PPI and here is what they had to say:
“PPI really offers significant opportunities for you to offer your valuable opinion and feedback on a range of topics that patients typically would never be involved in. Being able to see suggestions you have made and feedback you gave come through in different areas of RECOVER is a rewarding feeling knowing it will help patients”
“As a Parent of a CF son, I was delighted to be included in the RECOVER Study. It has been a very interesting learning process to see how many stages of organisation are needed to set up a study across so many hospitals. Being a participant has given me great insight on data collection, clinical challenges and the collaboration between Consultants and their Teams. Comments and feedback is always welcome from the PPI representatives at meetings too. Studies like RECOVER are so important to see how beneficial new drugs are for the Health of people with Cystic Fibrosis, it is a pleasure to assist in anyway.”
“I believe having an all inclusive approach to research from conception is vitally important on all projects. I believe both researchers and patient representatives bring valuable discussion and information to the table. Equal collaboration strengthens a project, that impact the pathway of the research and benefit the patient group.”