Could you help us design a research project for adults with cerebral palsy?

amcneill100
amcneill100 Community Member Posts: 1 Listener
edited August 2025 in Actions and opportunities

Could you help influence how a research project for adults with cerebral palsy is carried out? Recent research work has found that around ⅓ children with cerebral palsy have a genetic condition explaining why they have cerebral palsy.  We do not know if genetic testing in adults with cerebral palsy would identify a similar number of people with genetic conditions.  We area research team in Sheffield (Sheffield University and Sheffield Teaching Hospital) and we are undertaking a study to examine the role of advanced genetic testing techniques in the treatment of adults with cerebral palsy.  


This is where you come in, it is crucial that our research is shaped by the people it affects the most. We are seeking adults with cerebral palsy to join a "Patient and Public Involvement (PPI)" group, to act as our partners and advisors. This is not about taking part in the study itself, but about using your unique expertise to guide it. As a PPI member, you will help us design the research in a way that is practical and respectful for participants, and ensure our findings are shared in a way that is clear and meaningful.  As a PPI member we would ask you to either take part in an online focus group to discuss your views on the project or comment on our plans via email.  If you would like to find out more please contact Dr Alisdair McNeill, a doctor who specialises in medical genetics,  (a.mcneill@sheffield.ac.uk). Your time on the project would be reimbursed with a gift voucher.

Comments

  • Holly_Alumni
    Holly_Alumni Scope alumni Posts: 6,534 Championing

    The above post has been moderated and checked by the Online Community Team. This category is the only online community category that permits the publishing of an email, contact number or survey link.  

    Our website contains links to third parties’ websites for your information only. We have no control over the content of those sites or resources and we don’t endorse or accept liability for the content of them. 

    Read the full Terms and Conditions and our Community House Rules. 

Categories