Cystic Fibrosis (CF) is one of the UK’s most recognised rare inherited conditions. Did you know that it affects over 11,000 people in the UK and nearly 200,000 people worldwide? However, despite recent advance in treatment, there is still no cure for CF.
Why has the PULSE-CF Patient Advisory Group been created?
Around a quarter of adults with CF have ‘exacerbations’ or ‘flare-ups’ that need hospital treatment every year. Exacerbations can lead to poorer quality of life, long-lasting lung damage and shorter life expectancy. Unfortunately, treatments often have side effects.
The PULSE-CF Innovation Hub, led by a team in Manchester, wants to improve this by carrying out research to answer key questions:
- What causes exacerbations?
- Why do people respond differently to triggers like infections, allergies and pollution?
With this information and more, the team at PULSE-CF hopes to trial treatments to prevent exacerbations and improve the lives of people with CF in the future.
The PULSE-CF Patient Advisory Group, that is co-chaired with a CF patient, has been set up to ensure the work is led by patient needs and helps make their goals a reality!
What do the PULSE-CF Patient Advisory Group focus on?
Using their personal experiences of CF, they have a wide-ranging role and will continue to help the PULSE-CF Innovation Hub by:
- Shaping three different research studies focused on exacerbations
- Highlighting any areas of the Hub’s work where they believe there needs to be more focus to address patient needs.
- Supporting the Hub to create patient-facing materials that are accessible and easy to understand.
- Brainstorming ideas on how the Hub can engage with CF patients, their families, and the public in conversations about exacerbations and the work of the Hub.
What impact will they have on research?
The PULSE-CF Patient Advisory Group’s role is vital as they enable the Hub to ensure their work is led by the patient voice. They help ensure the Hub is asking the right questions and using the right approaches that will meet the needs of CF patients now and in the future.
They’re already made an impact in helping the Hub to develop accessible information and participant information sheets for their research studies. We’re excited to see how the groups develops as they continue to shape the direction of the Hub.
Watch this space to find out more about the difference the Patient Advisory Group make to the PULSE-CF Innovation Hub in the coming months.
Interested in getting involved?
That’s great to hear! If you have personal experience of CF and are interested in research, you’d be a perfect fit. Please get in touch with Sinduja (sinduja.manohar@mft.nhs.uk) and she’ll let you know next steps so that you can use your experiences and make a difference in CF research now and in the future!
The PULSE-CF Patient Advisory Group is supported and managed by Vocal on behalf of the PULSE-CF Innovation Hub.