Agenda - day 1
Registration, refreshments and networking
10am Welcome and introduction
Ed Owen, Chief Executive, Cystic Fibrosis Trust
10.10am Transformational treatments – Correctors and potentiators in the pipeline
Chair: Oli Rayner, Adult with cystic fibrosis
Professor Jane Davies, Reader and Honorary Consultant, Imperial College, London
Professor Stuart Elborn CBE, Adult Physician, Queen's University, Belfast
10.45am Increasing access to lung transplantation
Introduction: Claire Francis, Cystic Fibrosis Trust
Professor Andrew Fisher, Professor of Respiratory Transplant Medicine, University of Newcastle
11.30am Workshops session 1
12.30pm Lunch and opportunity to meet the sponsors
1.40pm Workshops session 2
2.40pm Adherence – The importance of habit formation
Dr Martin Wildman, Honorary Senior Clinical Lecturer Health Services Research, ScHARR, University of Sheffield and Consultant, Respiratory Medicine and Adult CF, Sheffield Adult CF Centre, Northern General Hospital
3.20pm Tea and coffee break
Hot topics
3.40pm Staphylococcus aureus – is prevention better than cure?
Dr Matthew Hurley, Clinical Research Fellow, University of Nottingham
3.55pm Modern assessment of lung disease (presentation)
Dr Alex Horsley, NIHR Clinician Scientist, University of Manchester & Honorary Consultant, Manchester Adult CF Centre
4.10pm Mycobacterium abscessus – detecting and controlling infection
Dr Andres Floto, Wellcome Trust Senior Clinical Fellow and Honorary Consultant Cystic Fibrosis/Lung Defence Unit, Papworth Hospital and Department of Respiratory Medicine, Addenbrooke's Hospital
4.25pm Torpedo project case study (presentation)
Dr Simon Langton Hewer, Consultant Respiratory Paediatrician, Bristol Royal Hospital for Children
4.40pm Closing comments
Ed Owen, Chief Executive, Cystic Fibrosis Trust
4.45pm Close
6pm Drinks reception and dinner
Day 2
10am Registration, refreshments and networking
10.30am Welcome and introduction from chair
Ed Owen, Chief Executive, Cystic Fibrosis Trust
10.45 am Working in partnership – proposals for enhanced collaboration between the Cystic Fibrosis Trust, patients and clinicians
Discussion with:
Ed Owen, Chief Executive, Cystic Fibrosis Trust
Dr Diana Bilton, Chair, CF Clinical Reference Group and Consultant Respiratory Physician, Royal Brompton Hospital
11.25 am Improved interpretation of lung function data – The global lung function initiative
Janet Stocks, Professor of Respiratory Physiology, UCL Institute of Child Health
12.20pm Lunch and opportunity to meet the sponsors
1.30pm Expert review of the UK CF Registry – initial recommendations
Professor Kathy Rowan, Director, ICNARC
2.20pm Planning in the new commissioning era
Chair: Iolo Doull, Consultant Respiratory Paediatrician, Children's Hospital for Wales
Dr Diana Bilton, Chair, CF Clinical Reference Group and Consultant Respiratory Physician, Royal Brompton Hospital
Mr David Turner, PPE representative, CF Clinical Reference Group
Dr Gordon MacGregor, Consultant Respiratory Physician, Gartnavel General Hospital, Glasgow
3pm The Registry and pharmacovigilance
Noreen Caine, Registry Consultant, Cystic Fibrosis Trust
Elaine Gunn, CF Registry Clinical Data Manager, Cystic Fibrosis Trust
3.15pm Update on research plans
Dr Janet Allen, Director of Research, Cystic Fibrosis Trust
3.30pm Closing comments
Ed Owen, Chief Executive, Cystic Fibrosis Trust
3.40pm Close