What is the NAR
Netherlands Autism Register
The Netherlands Autism Register (NAR) is a longitudinal register, including approximately 3300 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).
Researchers who want to collaborate with the Netherlands Autism Register can go to the page 'working with NAR-data' for more information.
The Dutch Autism Register has been approved by the Permanent Committee on Science and Ethics (VCWE) of the VU University Amsterdam.
Letter of Approval: VCWE Decision on VCWE-2022-164
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.
- Prof. Dr. Lydia Krabbendam - Vrije Universiteit Amsterdam
- Prof. Dr. Patricia Howlin - King's College London
- Prof. Dr. Meike Bartels - Vrije Universiteit Amsterdam
- Dr. Sandra Brouwer - Universitair Medisch Centrum Groningen (UMCG)
- Dr. Jeanet Landsman-Dijkstra - Universitair Medisch Centrum Groningen (UMCG)
- Prof. Dr. Hilde Geurts - Universiteit van Amsterdam (UvA)
- Drs. Marie Deserno - Universiteit van Amsterdam (UvA)
- Prof. Dr. Denny Borsboom - Universiteit van Amsterdam (UvA)
- Dr. Rosa Hoekstra - King's College London (KCL)
- Dr. Rachel Grove - The University of New South Wales Australia (UNSW)
- Prof. Chongying Wang - Nankai University (NU)
Dutch-speaking 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.
The NAR has a good distribution of men and women, across all ages, intelligence levels and the entirety of the Netherlands. However, the participants of the NAR are not fully representative for all people with autism. For instance, a relatively big number of women participate in NAR-research, as well as highly educated adults and adults without a migration background. When interpreting our results, it is important to know that our specific results are not necessarily applicable to all autistic people in the Netherlands and beyond.