Registry Annual Meeting 2026

Registry Annual Meeting 2026

Join us at the Leonardo Royal Hotel in Birmingham for a day of interesting talks, workshops and networking opportunities, that will help you get the most out of using the UK CF Registry. Presentations will include talks by key members of the Registry Steering Committee, Registry users and Registry staff.

This event is for in-person attendance only, and we regret that due to the risk of cross infection we are unable to accept participants with cystic fibrosis. 

Lunch is included and coffee and refreshment breaks will be provided throughout the day.

Registration will take place between 9.30 and 10.00am and the event will close at 4.30pm.

Please find the draft agenda below - note, this may be subject to change.

Presentations will include talks by key members of the Registry Steering Committee, including the Chair, Vice-Chair & Associate Director to include:

• Updates and latest news from the Registry Team
• Registry research and data request overview
• Year in Review: Key Highlights from the 2025 Registry Annual Data Report

Interactive workshops with members of the Registry Team and Registry users will be run in parallel with two sessions over the course of the day.

• Annual data cleaning: how can we help you to help us?                                                                               In this workshop we will review the annual data cleaning process and the spreadsheets we send you. We'd love your feedback on how we can improve these and make your job easier. 
• Introducing the CFSPID Registry                                                                                                                      Join us at this workshop to explore the CFSPID Registry currently under development. We will share the proposed objectives, variables, and access arrangement. We will also introduce supporting information materials that can be shared with parents and guardians at launch.          
• Registry Users Masterclass                                                                                                                             This workshop will discuss any data entries you may have including a short reminder of mandatory fields. Also including: adding IV admissions between annual review dates, dates of diagnosis, and genetic reporting. In addition, we will have an "open floor" for your queries so please bring them with you.  
• Informing the future of the CF Registry                                                                                                           This interactive workshop will consider how we best operationalise the new UK CF Registry Strategy. We will focus on what you, as users, want to see in terms of capabilities in and development of the system, and its outputs, to help achieve the ambitions set out in our new strategy.                                     

Spotlight Sessions: Voices from CF centres across the nation

Hear inspiring talks from Registry users at CF centres as they share best practices, innovative insights, and successful strategies. Speakers will have ten minutes to highlight their centre’s achievements and challenges, followed by a Q&A to foster collaboration and collective learning.

• Every Data point counts: The Co-Clinical Lead's role in ensuring accurate UK CF Registry data– Samantha Henson, Co-Clinical Lead, Papworth Adult CF Centre, Cambridge and Charlotte Dawson, Co-Clinical Lead, Great Ormond Street Paediatric CF Centre, London
• Enhancing data collection & entry at a large adult centre – Emma Winkle, CF Administrator; Nottingham University Hospitals NHS Trust
• From genetic report to Registry, genotype entry best practice - Kerry Laidlaw, Development Manager, Cystic Fibrosis Trust and Mary Cerkvenic, Medical Statistician, Cystic Fibrosis Trust
• CF Practitioner a new way of working at a large adult CF centre– Rebecca Heisse, CF Practitioner; Kings College Hospital NHS Trust

A selection of posters featuring UK CF Registry data, including research, quality improvement and best practice will be available to view in the main room.