UK Cystic Fibrosis Database

Request for Data

Data in the UK CF Database is available to researchers wishing to study aspects of the disease, subject to the uses that patients have agreed to when they give their consent for their data to be collected. Researchers may find it helpful to view the sample database forms before putting in a request as this will help them define what information they require, and whether it is collected in the Database. All requests for data must be made on a simple form and submitted to the Steering Committee, which meets quarterly. The Steering Committee is made up of Centre Directors, a patient/parent, members of the Database team and representatives from the CF Trust.