Netherlands Autism Register
Faculty of Behavioural and Movement Sciences, VU University Amsterdam
How can science help improve quality of life for people with autism? The Netherlands Autism Register was established in the belief that cooperation with the target group is necessary for scientific research into autism. The register, set up by the Dutch Association for Autism and VU University Amsterdam, is a unique database with figures on the condition. Online questionnaires are used to collect data from people with autism; this can help enhance their development and improve their quality of life.
The adults and children on the register receive a questionnaire about once a year, and can decide for themselves whether they wish to fill it in. All the data is coded before being processed and stored in a secure system, but participants can view their own performance in relation to the other participants via an online portal. The annual research report can also be downloaded from the website. In previous years, participants also helped decide the topics that would become themes for the upcoming research agenda.
Financing from the Rewarded! Fund will be used to involve participants with autism and their families even better in the Netherlands Autism Register by means of panels, liaison groups, and specific information about outcomes at individual and municipal level.
Sander Begeer, universitair hoofddocent
Other group members:
Tinca Polderman, universitair hoofddocent
Anke Scheeren, postdoc
Els van de Ven, universitair hoofddocent