Cystic Fibrosis Trust

Description

The Cystic Fibrosis Trust is the only UK-wide charity dedicated to fighting for a life unlimited by cystic fibrosis for everyone affected by the condition. We are working towards a brighter future by funding cutting-edge research, driving up standards of care & supporting people with the condition & their loved ones every step of the way. This is facilitated through constant fundraising & campaigning, alongside the following:-

Registry – The Cystic Fibrosis Trust sponsors & manages the UK Cystic Fibrosis Registry, one of the world’s leading databases of patient information with over 99% of people with cystic fibrosis consenting to their data being submitted. It provides a secure centralised database, recording demographic, health & treatment data on people with cystic fibrosis in England, Wales, Scotland & Northern Ireland.

Research – Our wide range of research grants offers support to scientists at every stage of their careers, attracting the brightest & best into the fight against cystic fibrosis. We’re the largest charity funder of cystic fibrosis research in the UK investing more than £3m into ground-breaking research.

Clinical Trials Accelerator Platform – The Clinical Trials Accelerator Platform is a UK-wide initiative which aims to facilitate & speed up the set-up of cystic fibrosis clinical trials. It will establish a collaboration of Trials Accelerator Centres who collectively, will increase the number of clinical trial opportunities & lead in the delivery of clinical trials for the cystic fibrosis community. The Trials Accelerator will ensure Patient & Public Involvement is embedded within all stages of this programme of work to ensure there is increased participation in clinical trials for the UK cystic fibrosis community.

Public involvement in research

In Autumn 2016 we launched our Clinical Trials Accelerator Platform to increase the opportunities, understanding and confidence of people with cystic fibrosis to participate in Clinical Trials, by seeking their involvement, and that of their families or carers, at all stages of the process. We invite our Cystic Fibrosis Community to contribute and review guidance documentation and website information, to utilise and feedback on availability of trials information recorded in our searchable trials database, along with reviewing the database functionality. We are incorporating training provision for understanding and supporting involvement in clinical trials which will lead to an established advisory group. Our PPI Advisory Group will be trained in PPI protocol review and will be influential in trial design, ensuring research is deliverable and meets the needs of the Cystic Fibrosis Community. Cross-infection risks prevent people with cystic fibrosis meeting in person but the Trust has an established excellent use of technology to facilitate involvement with the whole community.

The Cystic Fibrosis Trust has also co-supported the James Lind Alliance Priority Setting Partnership, with funding from the Trust’s Venture and Innovation Awards (VIAs). QuestionCF is a project which involved people with the condition, their families and Cystic Fibrosis Specialist Centres to establish the top 10 priorities for research based on what the cystic fibrosis community consider important.

https://www.cysticfibrosis.org.uk/get-involved/clinical-trials/taking-part-in-clinical-trials