In this presentation (from 2018) you will find a brief explanation of the Netherlands Autism Register. If you need more information, feel free to contact us.

The Dutch Autism Register has been approved by the Permanent Committee on Science and Ethics (VCWE) of the VU University Amsterdam.

Number: VCWE-2020-041R1

Letter of Approval: VCWE Decision on VCWE-2020-041R1

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 'Wetenschappelijke publicaties NAR'.

Available data

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

• General profile (marital status, ethnicity, IQ, language proficiency, mobility)
• Autism screening (AQ¹, CBCL Autism scale 2,5 - 6 years, MIPQ², RBQ³)
• Family characteristics work parents, information on siblings and other family members)
• Diagnosis (age and place of diagnose, comorbidity, physical complaints, SPQ⁴, ISI^{5 6 7})
• 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, CASE⁸, CASP⁸)
• Daily activities and work (work situation, daytime activities, sources of income)
• Free time and interests (special interests, leisure, boredom, LSS⁹, SIMS¹⁰)
• Social contacts (satisfaction social contacts, need for social contacts, satisfaction with social contacts, Loneliness Scale¹¹)
• Partner relationship (sexual orientation, duration of relationship, satisfaction current relationship)
• General well-being (strengths, participation in society, Cantrill Ladder¹², HAP¹², SAT¹², Perceived Stress Scale¹³)
• Autonomy and independence (W-ADL¹⁴, Mastery Scale¹⁵)
• Dutch Association for Autism (membership NVA, possession of Autipas)

A non-exhaustive overview of available data gathered from 2013 to 2020 can be found here. For questions about the available data, please contact info@nederlandsautismeregister.nl.

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 info@nederlandsautismeregister.nl. 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 info@nederlandsautismeregister.nl.

 

 

References

¹ Hoekstra, R. A., Vinkhuyzen, A. A. E., 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 Disorders, 41(5), 589–596.

² Ross, E., & Oliver, C. (2003). Preliminary analysis of the psychometric properties of the Mood, Interest & Pleasure Questionnaire (MIPQ) for adults with severe and profound learning disabilities. British Journal of Clinical Psychology, 42(1), 81–93.

³ Moss, J., Oliver, C., Arron, K., Burbidge, C., & Berg, K. (2009). The prevalence and phenomenology of repetitive behavior in genetic syndromes. Journal of Autism and Developmental Disorders, 39(4), 572–588. 

⁴ 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 autism, 5(1), 1.

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 Medicine, 12(5), 463-470.

⁷ Morin, C. M., Belleville, G., Bélanger, L., & Ivers, H. (2011). The Insomnia Severity Index: psychometric indicators to detect insomnia cases and evaluate treatment response. Sleep, 34(5), 601-608.

⁸ Bedell, G. M. (2004). Developing a follow-up survey focused on participation of children and youth with acquired brain injuries after discharge from inpatient rehabilitation. NeuroRehabilitation, 19(3), 191–205.
⁹ Trottier, A. N., Brown, G. T., Hobson, S. J. G., & Miller, W. (2002). Reliability and validity of the Leisure Satisfaction Scale (LSS - Short form) and the Adolescent Leisure Interest Profile (ALIP). Occupational Therapy International, 9(2), 131–144.

¹⁰ Grove, R., Roth, I., & Hoekstra, R. A. (2016). The motivation for special interests in individuals with autism and controls: Development and validation of the special interest motivation scale. Autism Research, 9(6), 677–688.

¹¹ van Beuningen, J., Coumans, M., & Moonen, L. (2018). Het meten van eenzaamheid.

¹² Bartels, M., & Boomsma, D. I. (2009). Born to be happy? the etiology of Subjective well-being. Behavior Genetics, 39(6), 605–615.

¹³ Cohen, S., Kamarck, T., & Mermelstein, R. (1983). A global measure of perceived stress. Journal of Health and Social Behavior, 24(4), 385–396.

¹⁴ Maenner, M., Smith, L.E., Hong, J., Makuch, R., Greenberg, J.S., & Mailick, M.R. (2013). Evaluation of an activities of daily living scale for adolescents and adults with developmental disabilities. Disability and Health Journal, 6(1), 8-17.

¹⁵ Pearlin, L.I. & Schooler, C. (1978). The structure of coping. Journal of Health and Social Behavior, 19(1), 2-21.