Volunteer: UK CF Registry Steering Committee Members - Professionals

The UK Cystic Fibrosis (CF) Registry is a web-based database that collects health and demographic data for people with CF across the UK. The Registry Steering Committee (RSC) is an independent advisory committee reporting to the Trust Board and responsible for recommending the strategic direction of the Registry and includes clinicians, commissioners, statisticians, Trust staff, and people with lived experience

About the role

We are seeking new Professional members of the 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.

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).

Cystic Fibrosis Trust is the UK's leading charity dedicated to uniting for a life unlimited for everyone with CF - one of the most common life-limiting genetic conditions., 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.