Community input on the project proposal
The initial project proposal for this study was developed in response to priorities identified in community consultations facilitated by James Lind Alliance Autism Priority Setting Partnerships for Autism (Priorities 1, 5, 13); Childhood Disability (Priority 1); Neurodevelopmental Disorders (Priorities 4, 5, 13); and Learning Difficulties (Priorities 4-7, 19). A panel of autistic adults and autism-advocates (co-ordinated by the charity Autistica) reviewed a draft of the proposal, and endorsed the project aims. The proposal was refined in collaboration with 2 autistic parents who have children with autism/ADHD.
Community input on the START programme materials
A Public and Patient Involvement (PPI) Panel comprising 10 parents who are themselves neurodivergent and/or have a child with autism and/or ADHD reviewed the draft programme materials and the revisions made in light of their recommendations.
Community input on the project governance
For the ongoing project, a Project Advisory Group comprising 3 autistic adults (one who was involved in the original proposal development) has been established to offer recommendations for participant- or public- facing materials including outcome measures, information and consent forms, dissemination materials and ad hoc advice for the project.
In addition, The Study Steering Committee includes a representative from the autism community (not involved in the Project Advisory Group or PPI panel).
Find out more and have your say
If you identify as a member of the autism or ADHD community, the START team welcome your feedback on the project. We cannot guarantee that all of your suggestions will be acted upon, but they will be taken seriously. We are also very happy to answer any questions you have about how the project is being managed.