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Cystic Fibrosis Trust

My CF Registry Patient Advisor

Team: UK CF Registry

Responsible to: Registry Development Manager

Time commitment: Four two-hour Skype meetings (May 2017, June 2017, October 2017 and February 2018), and approximately five hours of work either side of each meeting.

Location: Home-based within the UK

Application deadline: 15 May 2017

Apply to be a member of our Registry patient advisory group, and you could help to develop the new My CF Registry web application and empower people with cystic fibrosis (CF) to take control of their condition and their data!

What is the UK CF Registry?

The Cystic Fibrosis Trust sponsors and manages the UK CF Registry, which collects health information on consenting people with cystic fibrosis (CF). This information is stored securely to be used to improve the health of people with cystic fibrosis. This can be done through research, guiding quality improvement at care centres and monitoring the safety of new drugs. Care teams at every specialist CF centre in the UK enter data on approximately 99% of people with CF, with over 250 different pieces of data collected per person, per year.

What is My CF Registry?

We are currently developing My CF Registry – a patient portal to the UK CF Registry. People with CF who have consented to their data being collected on the Registry will be able to request an access code from their care team. They will then be able to register for an account on My CF Registry that is linked to their own health information.

We are now in the second phase of development – building a private, secure web application that allows adults with CF will be able to view their own Registry health data. We believe that people with CF, having lived with and managed their condition their entire lives, are experts on their own health, and therefore are the best people to advise on the design and promotion of this new feature, and so, we would like to set up an advisory group for adults with CF to be involved in its development.

Apply to the role

We would like to recruit 12 adults (aged 18 and over) with CF to the advisory group. All adults with CF in the UK whose data is stored on the Registry are invited to apply (if you are not sure about this, please check with your clinical care team). We are looking for people who can represent the needs and priorities of the UK adult CF community. No prior medical or statistical experience is necessary, as we want to ensure that the application is easily understandable to people with all levels of knowledge. However, any skills you do have in these areas are very welcome.

To find out more about the role, take a look at the full role description. To apply, fill in the application form, and return this to involvement@cysticfibrosis.org.uk.

The deadline for applications is 15 May 2017.




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.

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What is cystic fibrosis?

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