UK CF Registry
Research type
Research Database
IRAS ID
209459
Contact email
Research summary
UK Cystic Fibrosis Registry
REC name
East of England - Cambridge East Research Ethics Committee
REC reference
24/EE/0012
Date of REC Opinion
26 Mar 2024
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Th UK Cystic Fibrosis Registry collects data on people with CF from routinely collected health records. All participants provide consent for data collection. Data are entered onto the Registry by the clinical care teams at cystic fibrosis centres in the UK. The Registry is a secure online portal managed by a organisation with NHS Data Security and Protection Toolkit certification. Data are stored on secure Microsoft Azure servers.
Research programme
Th UK CF Registry supports people living with cystic fibrosis and their families through research carried out by clinical teams and epidemiologists. The Registry Annual Report also provides population-level data to help people with CF and their families understand CF and make informed decisions.
Research database title
UK Cystic Fibrosis Registry
Establishment organisation
Cystic Fibrosis Trust
Establishment organisation address
1 Aldgate
London
EC3N 1RE