Cystic Fibrosis Trust is the only UK-wide charity dedicated to fighting for a life unlimited for everyone affected by cystic fibrosis. They support people with cystic fibrosis and their families in any way they can by:

  • Funding ground-breaking research
  • Promoting the highest quality care
  • Providing information and support when it’s needed most
  • Fighting for access to life-saving drugs

Cystic Fibrosis Trust sponsor and manage the UK Cystic Fibrosis Registry. This secure centralised database, records health data on consenting people with cystic fibrosis in England, Wales, Scotland and Northern Ireland.

Datasets

UK Cystic Fibrosis (CF) Registry

Researchers from recognised institutions can apply for access to aggregated, anonymised, or pseudonymised data from the UK CF Registry to perform their own analysis for the benefit of people with CF. The UK CF Registry sends annual data to the ECFS Patient Registry, a common platform for data collection on CF patients in Europe.

Cystic Fibrosis Trust in the Innovation Gateway

Further Information

Visit: https://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry,

Email: registry@cysticfibrosis.org.uk

Follow: Twitter @CFTrust

Work that the Cystic Fibrosis Trust has been involved in:
Opinion
‘From database to bedside’ – Cystic Fibrosis Trust as a member of the UK Health Data Research Alliance
3 September 2019
People with cystic fibrosis are remarkably research-motivated and data-savvy. They have proven time and again to enthusiastically participate in research, even when the results may not directly benefit them.