Working with NAR-data

Working with NAR data

Researchers can request use of the data collected by the NAR. Our research data are pseudonimized, annotated and stored in a database separate from participants’ contact details. For a non-exhaustive list of recent publications with NAR-data visit the page 'Publications'.

Available data

We collect information on, amongst others, the following domains:

  • General profile (marital status, ethnicity, IQ, language proficiency, mobility)
  • Autism screening (AQ, CBCL Autism scale 2,5 - 6 years, MIPQ, RBQ)
  • Family characteristics work parents, information on siblings and other family members)
  • Diagnosis (age and place of diagnose, comorbidity, physical complaints, SPQ, ISI)
  • Treatment, medication & guidance (followed treatments, use of medication, guidance by who and where)
  • Housing (housing situation, form of housing, income of current household, stimuli in living environment, satisfaction with housing situation)
  • Education (highest level of education, special form of education, CASE, CASP)
  • Daily activities and work (work situation, daytime activities, sources of income)
  • Free time and interests (special interests, leisure, boredom, LSS, SIMS)
  • Social contacts (satisfaction social contacts, need for social contacts, satisfaction with social contacts, Loneliness Scale)
  • Partner relationship (sexual orientation, duration of relationship, satisfaction current relationship)
  • General well-being (strengths, participation in society, Cantrill Ladder, HAP, SAT, Perceived Stress Scale)
  • Autonomy and independence (W-ADL, Mastery Scale)
  • Dutch Association for Autism (membership NVA, possession of Autipas)

A non-exhaustive overview of available data gathered from 2013 to 2024 can be found here. For questions about the available data, please contact

Submitting a data sharing request

Researchers who want to collaborate with the Netherlands Autism Register can fill out this form and contact the NAR via Your data request will be reviewed by the NAR-team. Once the NAR-team has reviewed your request (typically within 2 weeks) you will be informed of the outcome. If the request is not approved, you may be requested to revise the proposal and resubmit.

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. A typical data request takes approximately 2 weeks to prepare. If your request is particularly complex or if your request comes at a very busy time, more time may be needed. If this is the case, you will be informed of this by NAR data management.

If you have any questions that have not been answered, feel free to contact the NAR team via