Netherlands Autism Register

The Netherlands Autism Register (NAR) is a longitudinal register, including approximately 2000 individuals with autism. The NAR was established by the Dutch Association for Autism (Nederlandse Vereniging voor Autisme; NVA) in collaboration with the Vrije Universiteit Amsterdam (VU) .

Why?

The aim of the NAR is to follow the course of development of individuals with autism over time, primarily through online questionnaires. We collect information on a wide range of topics related to the living situation of people with autism in the Netherlands. This way we can identify the differences and similarities between people with autism. The data from the NAR are valuable for scientific research. The NAR also helps people with autism to protect their interests and improve their quality of life.

Parents of children with autism, people with autism, but also health care professionals and scientists all have questions about autism. Together we can find answers to these questions. For instance, one person with autism may be able to hold a job, and have a satisfying social life, while the other one, despite similar cognitive skills, fails to do so. What causes such individual differences? What additional problems do individuals with autism develop? What are the benefits of having autism? What are success factors? By following a large group of people we can explore what factors have an impact on their quality of life. 

The NAR collaborates with national and international researchers, and aims to share information to improve knowledge and care for autism around the world.

For whom?

Parents of children with autism, or adolescents (>16 year) or adults with autism can participate in the NAR. The participants are followed over time, which means that they receive one questionnaire per year. For each questionnaire, the participant can decide whether he / she wants to participate. Participation in the registry is voluntary and free. All data will be processed anonymously and stored in a secure system. 

Domains of research

We know more and more about autism. For example, autism is highly hereditary. We also know about the brain functioning of a person with autism. We also know that there are large individual differences in the extent to which people with autism are capable of independent, meaningful and happy life. But what factors determine successful outcomes?

The NAR identifies the differences and similarities between people with autism. We ask questions about the following domains:

Publications

References

¹ Hoekstra, R. A., Vinkhuyzen, A. A., Wheelwright, S., Bartels, M., Boomsma, D. I., Baron-Cohen, S., Posthuma, D. & van der Sluis, S. (2011). The construction and validation of an abridged version of the autism-spectrum quotient (AQ-Short). Journal of autism and developmental disorders41(5), 589-596. 
² Grove, R., Hoekstra, R. A., Wierda, M. & Begeer, S. (2016). Sex differences in the autism spectrum quotient short form: A factor analytic study of adults with autism. Autism, 1-9.
³ Tavassoli, T., Hoekstra, R. A., & Baron-Cohen, S. (2014). The Sensory Perception Quotient (SPQ): development and validation of a new sensory questionnaire for adults with and without autism. Molecular autism5(1), 1.
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⁵ Bastien, C. H., Vallieres, A., & Morin, C. M. (2001). Validation of the Insomnia Severity Index as an outcome measure for insomnia research. Sleep medicine,2(4), 297-307.
⁶ Chung, K. F., Kan, K. K. K., & Yeung, W. F. (2011). Assessing insomnia in adolescents: Comparison of insomnia severity index, athens insomnia scale and sleep quality index. Sleep Medicine12(5), 463-470.
⁷ Grove, R., Roth, I., & Hoekstra, R. A. (2015). The motivation for special interests in individuals with autism and controls: Development and validation of the special interest motivation scale. Autism Research.
⁸ Bartels, M., & Boomsma, D. I. (2009). Born to be happy? The etiology of subjective well-being. Behavior genetics39(6), 605-615.
⁹ Pearlin, L. I., & Schooler, C. (1978). The structure of copingJournal of health and social behavior, 2-21.