Neurofibromatosis type-1 (NF1) is a rare genetic condition. Did you know that 50% of people with NF1 will have inherited the condition from a parent with NF1 while the other 50% will be the first in the family with no previous family history?
This means NF1 can affect anyone. That’s why researchers in Manchester are leading on a wide range of research studies to better understand the mechanisms both behind NF1 and its associated symptoms.
Why have the NF1 Parent and NF1 Children and Young People Panels been created?
Children diagnosed with NF1 experience learning difficulties which can then affect their education and quality of life. However, it’s not yet understood why children with NF1 experience learning difficulties.
A number of research studies are being carried out in Manchester to explore this further. The NF1 Parent and NF1 Children and Young People Panels sit alongside each other to ensure the research team are asking the right questions and using the right approaches to better explore how people with NF1 ‘learn’.
What do the NF1 Parent and NF1 Children and Young People Panels focus on?
Seven parents and eight young people, all with personal experience of NF1 make up their respective panels. They have a wide-ranging role and help the NF1 research team by sharing:
- Ideas on how to recruit people to participate in the research studies
- Thoughts on how to make the studies more exciting for young people to get involved in
- Ideas on how to make children and young people feel more comfortable in taking part in research studies
- Opinions on what the results from research studies tell us and how the results can help people with NF1 in the future
- Ideas on how to share the findings of the research projects with people with experience of NF1 across the UK
What impact will they have on research?
The NF1 Parent and NF1 Children and Young People Panels are vital as they enable the NF1 research team to ensure their work is led by the patient voice.
They’re already made an impact by shaping research funding applications, shared ideas to help improve recruitment to research studies and suggested improvements that have helped the team’s young participants have MRI scans that are more comfortable and feel less scary. We’re excited to see how the two panels develop as they continue to shape the direction of NF1 research.
Watch this space to find out more about the difference the NF1 panels continue to make to the NF1 research in the coming months.
Interested in getting involved?
That’s great to hear! If you have personal experience of NF1 (either yourself or as a parent / guardian) 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 NF1 research now and in the future!
The NF1 Parent and NF1 Children and Young People Panels are supported and managed by Vocal on behalf of NF1 studies supported through the NIHR Manchester Biomedical Research Centre.