The Netherlands Autism Register (NAR) is a longitudinal register, including approximately 2500 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) .
In this presentation you will find a brief explanation of the Netherlands Autism Register. If you need more information, feel free to contact us.
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.
Parents of children with autism, legal guardians of people with autism, adults with autism (>16 year) and adults without 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 they want to participate. Participation in the registry is voluntary and free. All data will be processed confidentially and is encrypted and stored in a secure system.
Domains of research
We know more and more about autism. For example, autism is highly hereditary. Furthermore, we 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:
Grove, R., Hoekstra, R. A., Wierda, M. & Begeer, S. (2016). Sex differences in autistic traits. Poster session presented at the Australasian Society for Autism Research Conference 2016, University of Western Australia, Perth.