Meet the COS-CF team
Bethinn Evans
PHD STUDENT
I'm a PhD student living with CF, based at Queen’s University Belfast. My personal journey with CF has fuelled my passion for research that reflects the needs of our community and prioritises the voices and experiences of those it impacts most.
Dr Rebecca Calthorpe
MEDICAL RESEARCH FELLOW
I am a medical research fellow at the University of Nottingham, UK. I am also a paediatric registrar in the East Midlands, UK. My research interests are gastrointestinal research in CF and the development and use of validated outcome measures to understand GI symptoms in CF.
Prof Alan Smyth
PROFESSOR OF CHILD HEALTH
I am Dean and Head of School of Medicine, Dentistry and Biomedical Sciences, at Queen’s University Belfast and Professor of Child Health at Queen’s.
For the last 10 years my research in cystic fibrosis (CF) has focussed on finding out which research questions matter most to patients. Guided by the patient community, who have asked for more research into gastrointestinal (GI) problems in CF, I have conducted GI research. I have a long standing interest in using research evidence (and the efforts of patients and researchers who created the evidence) more efficiently. That is why I am leading this important research to develop a universal core outcome set for CF.
Prof Carmel Hughes
ACADEMIC PHARMACIST
I am academic pharmacist based at the School of Pharmacy, Queen’s University Belfast. I have an interest in evidence-based health care, improving prescribing of medicines for vulnerable populations and the development of Core Outcome Sets.
Prof Damian Downey
PROFESSOR & RESPIRATORY PHYSICIAN
I am a Professor of Respiratory Medicine at the Wellcome-Wolfson Institute for Experimental Medicine, and a Consultant Respiratory Physician, specialising in cystic fibrosis, at the Belfast Health and Social Care Trust, Northern Ireland.
His main research interests include drug discovery, clinical trials of new therapies, and the use of novel endpoints. His lab also focuses on airway infection and inflammation in CF. He was the former director (2021-2023) of the European CF Society – Clinical Trials Network, which oversees clinical trials in 57 research sites across 17 countries. He is the European lead of a major study exploring COVID antibodies in CF (CAR-CF) with almost 2000 pwCF recruited across Europe.
Dr Gwyneth Davies
CLINICAL ASSOCIATE PROFESSOR
Gwyneth is a clinical associate professor at the UCL Great Ormond Street Institute of Child Health, London UK. She holds a personal fellowship (Future Leaders Fellowship) from UK Research and Innovation. Gwyneth has experience in investigator-led and commercially sponsored clinical trials involving people with cystic fibrosis (CF). Her research interests include clinical trials and their design, simplifying treatment burden in CF, disease registries, and maximising the value of routine health data. Gwyneth is a member of the UK CF Registry Steering Committee.
Prof Kim Thomas
PROFESSOR OF APPLIED DERMATOLOGY RESEARCH
I am Professor of Applied Dermatology Research and Co-Director of the Centre of Evidence Based Dermatology at the University of Nottingham. My main areas of research expertise are in the design and conduct of randomised controlled trials, and the development and testing of outcome measures. My work answers questions about the treatment and prevention of skin conditions that are important to people with skin disease and the NHS.
I have helped to lead several international core outcome sets, including the HOME initiative (eczema), CORALS (lichen sclerosus) and UPGRADE (pyoderma gangrenosum). I am also a member of the methods group for the CHORD-COUSIN Collaboration (C3), which provides support for people developing core outcome sets in dermatology.
Dr Sarah Gorst
Researcher
I am a researcher based in the Department of Health Data Science at the University of Liverpool. I co-ordinate the global COMET (Core Outcome Measures in Effectiveness Trials) Initiative, aiming to improve the quality and relevance of health research by improving the outcomes measured. My research role concerns methodological projects relating to the development and uptake of core outcome sets (COS). I am particularly interested in improving the process of deciding how to measure core outcomes, aiming to better support trialists in using COS in their studies. On a personal note, I have a particular interest in developing a high-quality COS for CF, as my sister lives with CF.
Jenny R
CF parent
As a mum to a young adult with cystic fibrosis, I have experience navigating care from early diagnosis through daily treatments and clinical trials. I’ve seen the transformative impact of new therapies and am passionate about ensuring future research reflects the real needs of patients and carers whilst being practical, sustainable, and able to fit within the realities of family life.
