The UK CF Registry contains a substantial amount of clinical and demographic data from 2002 to present (and less data going back to 1999). This completely anonymised dataset is available to researchers at recognised institutions for appropriate research into Cystic Fibrosis.

Applications for data should be submitted on the form below, which should be emailed to the CF Registry help desk. All applications will be considered by the CF Registry Steering Committee. Applications will be dealt with as received, but please note that the process of approval and producing the requested dataset is unlikely to be achievable in less than ten working days.

Data or information will be provided free of charge to those who contribute to the UK CF Registry. All other requests will be subject to a charge depending on the nature, complexity and source of the request.

The decision of the CF Registry Steering Committee either to provide the data or to make a charge for it will be final.

CF Registry Data Request Form 2009

Annual Data Reports from the UK CF Registry can be accessed and downloaded here.