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:

A complete overview of available data gathered from 2013 to 2020 can be found here [temporarily unavailable, please send an e-mail]. 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, 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

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