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Cystic Fibrosis Trust

Registry Steering Committee Member - voluntary position

Team: Registry

Responsible to: Registry Coordinator

Potential time commitment per week: Quarterly Meetings

Location: Head Office, Aldgate

Voluntary position: We cover travel expenses

About this role

The Cystic Fibrosis Trust sponsors and manages the UK Cystic Fibrosis (CF) Registry. This national, centralised web-based database collects demographic, health and treatment data from consenting people with cystic fibrosis from every CF care centre in the UK. The registry helps parents and people with CF to understand the condition. The Registry also provides the clinical teams with evidence to improve the quality of care for people with CF across UK.

As part of the Registry governance, there is an active Steering Committee which meets four times a year, and provides strategic direction for the Registry development. We are looking for a person with CF to join the committee, for a term of 3 years with possibility of re-election for a second term. Meetings are held at the London HQ, however, it is possible to attend via Skype; committee members will also need to be available for minimal consultation between meetings.

Applications for this role are now closed.

Your privacy

We welcome your interest in working with us here at the Cystic Fibrosis Trust. In order to review and manage your application, we need to collect certain personal information about you through your application. We are committed to protecting your personal information and being transparent in what we do with it. 

We will only use your personal information as required to manage your application to work with us, or as required by applicable law or regulatory requirements.  

We do ask that you help us monitor our performance on equality by completing the accompanying Equal Opportunities Form which contains no identifiable personal information. Doing so is optional, and any information you provide through this form will be used to provide generalised aggregated reports. It will not affect your application in any way and is kept separately.

In the event your application is unsuccessful, we will retain your information for up to 6 months, before it is disposed of confidentially.  

For more detailed information on your rights and how we use any data you provide us, please see our privacy policy.

Research we're funding

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.

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.

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.