Working with children, young people, and families
Children, young people, and family members are not a separate audience for our research. They are experts with lived experience who help us decide what to study, how to design it, and how to share the results. We acknowledge their contribution in every output.
How we work
We involve young people and family members from the start of every study — when we shape the question, design materials, agree what to measure, and decide how to share the results. We pay for time and expertise in line with NIHR INVOLVE guidance, provide accessible materials, and meet at times that suit panel members rather than researchers. After each round of input we feed back what changed because of it.
Our panel
Our standing panel brings together young people who have grown up with childhood movement disorders and parents or carers from across the UK. Panel members contribute to study design, materials review, recruitment strategy, and dissemination. We rotate membership over time so that fresh voices and lived experience continue to shape the programme.
Get involved
If you are a young person with a movement disorder, or a parent or carer, and you would like to help shape our work, get in touch through the contact page. We will explain what is involved, the time commitment, and how we recognise your contribution before you commit to anything.
Resources we have made with families
Co-produced outputs — including plain-language study summaries, short explainer videos, and printable information sheets — are listed in the Resources section as they become available.