Researchers may request use of data collected by the NAR. Our research data are pseudonymized, annotated, and stored in a database separate from participants' contact information.
More information on NAR data
For a non-exhaustive list of recent publications using NAR data, visit the Publications page.
Additional explanations and instructions on working with NAR data can be found here: Instructions NAR data
A non-exhaustive overview of available data collected from 2013 to 2024 can be found in the NAR questionoverview or in this file: surveys by wave.
More detailed information on NAR data can be found in the codebook (also available in Excel).
For questions on available data, please contact info@nederlandsautismeregister.nl.
Available data
The NAR maps the differences and similarities between autistic people. We collect baseline data on such things as:
- Person characteristics (marital status, ethnicity, IQ, milestones language, motor skills and potty training);
- Autism screening (AQ, CBCL Autism Scale 2.5 - 6 years, MIPQ, RBQ);
- Family characteristics (parents' work situation, information on siblings and other family members);
- Diagnostics (age of diagnosis, where and by whom was the diagnosis made, additional diagnoses, physical symptoms, SPQ, ISI);
- Treatment and counselling (treatments followed, medication use, counselling);
- Living (living situation, housing form, current household income, stimuli in living environment, satisfaction with living situation);
- Education (highest education received, special forms of education, CASE, CASP);
- Day care and work (work situation, forms of day care, sources of income);
- Leisure and interests (special interests, leisure activities, boredom, LSS, SIMS);
- Social contacts (satisfaction social contacts, need for social contacts, rating social contacts, Loneliness Scale);
- Partner relationships (orientation, length of relationship, satisfaction current relationship);
- General well-being (strengths, participation in society, Cantrill Ladder, HAP, SAT, Perceived Stress Scale, Nijmegen Parental Stress Index (NOSI));
- Autonomy and independence (W-ADL);
- Dutch Autime Association (NVA membership, Autipas possession).
Submit a data request
Researchers interested in collaborating with the Netherlands Autism Register can fill out this form and contact the NAR at info@nederlandsautismeregister.nl. Your data request will be reviewed by the NAR team. Once the NAR team has reviewed your application (usually within 2 weeks), you will be notified of the outcome. If the application is not approved, you may be asked to revise and resubmit the proposal.
Once your data request is approved, you will be asked to sign a data sharing agreement (DSA). Once we receive your signed data sharing agreement, data management will prepare your dataset. Preparing a typical data request takes about 2 weeks. If your request is particularly complex or comes at a very busy time, more time may be required. In this case, you will be notified by NAR data management.
If you have any questions that have not been answered, please contact the NAR team at info@nederlandsautismeregister.nl.