UK CF Registry Steering Committee Members - Professionals

We are seeking new Professional members of the Registry Steering Committee (RSC) to help shape the future of the Registry and ensure it meets the needs of people with CF, clinical teams, researchers and other stakeholders.

This is a voluntary role (unpaid), but reasonable expenses can be claimed for travel to attend meetings in person if required.

This role part time and home based.  This is a UK based role and candidates need to be UK based.

Term and commitment

• RSC membership term: three years (minimum one term).
• RSC meets quarterly (commitment to attend at least two meetings per year).

Who we’re looking for

We particularly welcome applications from CF professionals including:

• Adult and paediatric clinicians
• Early career professionals
• Pharmacists
• Allied health professionals
• Psychosocial workers

Applicants from across all four nations of the UK and from both adult and paediatric services are encouraged to apply.

Key responsibilities

• Contribute to strategic discussions and decision-making about the Registry’s direction.
• Review RSC papers and related documents outside scheduled meetings.
• Act as an advocate for the UK CF Registry.
• Optional: Join the Registry Data Review Group. This group meets online every six weeks and members provide Registry data request approval.

Essential experience and attributes

• Knowledge of cystic fibrosis and its key challenges.
• Ability to actively contribute to committee discussions and support informed decision-making.
• Ideally some experience working with the UK CF Registry or using its data outputs.
• CF clinicians and AHPs should be members of relevant professional bodies (e.g., BTS/BPRS, RCP/RCN, Cystic Fibrosis Specialist Group, CFMA).

Why join us? 

• Make a meaningful impact on the lives of people affected by CF.
• Shape future Registry development and research.
• Engage with purpose-led peers and develop transferable skills (e.g., application reviewing, public speaking).
• Demonstrate continuing professional development through voluntary service.

Together we’re uniting for a lie unlimited for people living with CF. Add your experience and voice to the RSC and help steer the future of CF care and research.

Your Experience. Your voice. Your Impact.