Your donation will make a difference:
Cystic Fibrosis Trust

Apply for data from the UK CF Registry

Our registry contains a large amount of clinical and demographic data on cystic fibrosis (CF) in the UK, from 2002 to the present day.

This fully anonymised dataset has ethical approval, which allows data to be made available to researchers at recognised institutions for appropriate research into cystic fibrosis.

Applications for data should be submitted using the form below and emailed to the CF Registry helpdesk. All applications will be considered by the CF Registry Research Committee.

The data request process from receiving the data request to a final decision and release of the data is up to four weeks.

Data are provided free of charge to the CF clinical community who contribute to the data collection. Other requests may be subject to a charge to ensure costs are recovered depending on the nature, complexity and source of the request.

To apply for data, please complete the request form below and email to registry@cysticfibrosis.org.uk.

The decision of the Registry Research Committee, either to provide the data or to charge for it, is final.

Download the demographic template and annual review template to see what is collected in the UK CF Registry.

You can access and download Annual Data Reports from the UK CF Registry



Research

The Trust is committed to funding and supporting cutting-edge research to find new and better treatments for cystic fibrosis. Take a look at some of that work and the progress that is being made.

Discover more

What is cystic fibrosis?

Find out more about cystic fibrosis, its diagnosis and how it is treated, as well as useful links to our publications and other organisations who can help.

Read on

More information

If you would like to find out more about any of our campaigns, publications or anything else, get in touch and we'll be happy to help.

Get in touch
Related Posts Plugin for WordPress, Blogger...