Involvement Groups
Over the last quarter, there have been a total of 10 focus groups to discuss specific projects within the Trust or projects that research teams are developing.
Not only are these small groups a great opportunity for discussion, but they also offer the chance for people with CF and their families to meet, to learn something new about the Trust, research, science or funding streams - and they offer the opportunity for project teams to learn a lot about what it means to live with CF ensuring their projects meet the true requirements of the community they aim to serve.
The focus groups have covered:
- Health monitoring preferences (i.e., body composition), meaningful measurements in trials or treatment plans and developing mobile apps to support research studies
- Project planning for the Trust’s Clinical Trials Accelerator Platform and renewing the online forum.
- Learning about stem cell therapies or how reformulating medicines could reduce the time burden of treatment
- Discussing how the Trust receives funding for welfare, education and holiday grants for people with CF.
- Youth involvement – how and why the voice of young people with CF can influence science.
Tell us what areas interest you. Email: [email protected].