Involvement news and opportunities
If you have any questions or are interested in taking part in any of the opportunities listed here, get in touch with the Involvement team at [email protected].
News
Here we share how your involvement has shaped the work of the Trust and researchers working in the field of CF.
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Latest news – Involvement in shaping the design of a new home diagnostic tool to detect Pseudomonas aerguinosa
The members of the Trust's Involvement Group are people living with CF themselves or family who support them. Their lived experience helps guide the design and development of CF research, clinical trials and key projects within the Trust by ensuring the practicalities of managing the condition are considered throughout and projects remain relevant to the community.
The challenges and concern the CF community experience in detecting and monitoring lung infections impacts their confidence in how their health is managed. Through focus group discussions, members of the Involvement Group have informed the design and scope of use for a new diagnostic tool to detect Pseudomonas aeruginosa (p. aeruginosa). The tool is currently being developed by a spin-out company from the University of Nottingham. This work is being lead by researcher Shaun Robertson.
Shaun kindly joined our Involvement CF Live event in February where we showcased the value of community involvement in a wide range of projects. He said, from our focus groups, the community shared information “above and beyond what we expected. There was a lot of information we didn’t even know about that was really important. These unknown unknowns could seriously derail what you’re doing and lead to a non-viable product.” He said without this information, he “would probably not be in a position to form a spin-out company.”
Those who joined the focus groups were really supportive of Shaun’s project and felt that this new test for p. aeruginosa could be of real benefit to the wider community.
The research that Shaun and his team are doing is very exciting, my daughter with CF has a chronic infection of p. aeruginosa and has had for years now. Knowing how hit and miss a cough swab can be, any advancement in detecting p. aeruginosa can only be a good thing and help get on top of any infections quicker and hopefully help to eradicate it before the infection and symptoms get too bad. I'm very excited and hopeful to hear how this research progresses not just for my daughter but the whole CF community.
– Rachel, whose daughter has CF
Through Involvement, your insights have so much value and impact in bringing real-world improvements to the CF community. If you would like to get involved, or have any questions about doing so, you can email us at [email protected] – we would love to hear from you!
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Past involvement impact
Here are some previous blogs that showcase involvement that has happened and how your involvement has shaped our work and continues to do so. We maintain our pledge to put people with CF at the heart of everything we do.
Blog – Refreshed top 10 research priorities
Blog – Putting people with CF at the centre of our decision making
Opportunities
There are lots of different ways you can get involved. There's a whole range of topics and activities you can get involved with.
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Topics
This is a selection of the range of topics we cover:
- Research and clinical trials, including genetic therapies and alternatives to modulators
- Early and late diagnosis, and carrier status
- Growing older with CF – clinical and lifestyle considerations
- Access to medication
- Parenting and fertility
- Education and employment
- Mental health and wellbeing
- Nutrition and exercise
- Health issues such as lung health, gut health, CF diabetes
- Transplant
- Finances and cost of living
- Infection prevention
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Activities
There is a whole range of involvement activities:
- Reviewing documents and information resources and giving feedback
- Discussions on managing treatment – to improve medication design and streamline admin processes.
- Joining CF live events – chairing or sharing a personal story
- Taking part in a focus group
- One to one interviews
- Opportunities to speak at events
- Joining project groups/steering groups
- Informing awareness campaigns about life with CF
- Helping to determine priorities for research and the trust
- Reviewing research applications for funding
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Shape our information and support
Provide your feedback, thoughts and ideas to help us make sure that the information and support we develop and provide meets the needs of everyone with CF across the UK.
Find out more about our Information, Support and Programmes Advisory Groups
Sign up today
Everyone's lived experiences of CF are valuable, whether you have CF yourself or are a parent, partner or family member of someone with CF. If you're unsure about sharing your experiences, we're happy to book in a quick chat to help you.
You can register your interest by emailing the involvement team via [email protected].
Last updated July 2024
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