A survey has launched as part of a consultation led by Autistica, bringing together organisations, individuals on the autism spectrum, families and professionals to identify the most important autism research questions to answer. Autistica is working with a number of partners including The National Autistic Society, the Autism Alliance and Autism Research Trust.
This is an independent & transparent James Lind Alliance initiative, well-respected by the National Institute for Health Research (NIHR) and other research funders as it is an inclusive consultation giving the whole community the opportunity to develop a list of Top 10 research questions.
The goal is to increase funding for autism research and the process has a track record of success, incentivising researchers to respond to the Top 10 questions.
Why is it so valuable to the autism community?
- It is community led – it asks those who experience autism in their daily lives, rather than scientists who usually set research priorities.
- It is independent – led by a steering group consisting of charity representatives, clinicians, individuals with autism, siblings and parents and chaired by an independent JLA advisor. A wide range of partners also contribute & circulate the survey widely within their networks.
- It is tried-and-tested – it has already proved effective in seeking broad community views and leveraging funding in other health issues (eg. depression, asthma and dementia)
- It increases research funding for autism – the process is recognised by research funders and NIHR and will therefore encourage spending in the areas that get defined by the process.
- It ensures research is not duplicated – the process will eliminate anything that has already been researched so that the final list will direct researchers to concentrate on true ‘unknowns’, thus using future research funding efficiently.
Autistica is encouraging organisations in contact with individuals with a personal or professional connection to autism to share the survey which launched on 12 May and will be open for up to 3 months.
Survey open: 12 May (for up to 3 months, depending on response levels)
Survey link: autistica.org.uk/research/survey/
(request paper copies via contact below)
Contact: Rebecca Sterry via [email protected] or call 056 011 88981 Twitter: @AutisticaUK #AutismPriorities