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.
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.
- How to apply for Registry data https://cms.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-for-data-from-the-uk-cf-registry
- Download the demographic templateand annual review template to see what is collected in the UK CF Registry.
- Download the UK CF Registry Annual Data Reports
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