Participation and data

Who can participate in the NAR?

  1. Individuals with autism who are 16 years or older.
  2. Parents or caregivers of a child with autism under 16 years old.
  3. Legal representatives of autistic individuals over 16, with high care needs (regardless of intellectual disabilities), who are deemed incapable of making decisions.

Even if you don't have an autism diagnosis, you can join the NAR. Comparing experiences of those with and without autism helps us better understand autism and support needs. You can sign up for the NAR control group if you:

  • Don't have autism.
  • Are 16 years or older.
  • Don't have a direct family member with autism (like a sibling, parent, or child).

If you don't fit any of the above groups, you unfortunately can't join NAR. However, you can inform an autistic individual or their representative about the NAR.

What does participation involve?

By filling out a registration form, you can join the NAR. Participation is voluntary and free. After we receive your form, you'll get an email asking you to complete an online questionnaire, which takes about 45 minutes. It covers topics like personal background, family, autism-related symptoms, diagnosis, treatment, education, work, housing, and leisure.

The goal of NAR is to track both children and adults with autism over time. So, if you join, expect an annual invitation to fill out a questionnaire. Each year you can choose whether you want to participate that year. 

In the future, we might invite you for additional smaller studies, which might involve in-person meetings to gather more detailed information. Participation is always up to you.

Every year, participants receive feedback comparing their responses to the average of all NAR participants and those of a similar age and gender. More details are provided on individual feedback here.

How do we use the gathered data?

The collected questionnaire data is used solely for research and advocacy purposes. It might involve collaboration with academic institutions like universities or colleges.

The research results will aid the Dutch Association for Autism (NVA) in advocating for better care, education, housing, and guidance for autistic individuals, both children and adults.

Every year, our findings are showcased in our interactive 'NAR in Figures' dashboard, where you can view general research outcomes by target group or province.

Additionally, participants get personal feedback on parts of the questionnaire towards the end of each year via email (more information here). 

How does the NAR handle data?

The NAR uses two separate databases:

  1. Personal Information Database: This holds personal details like names, birthdates, and email addresses. It's on a computer that's isolated, not connected to the internet or any network. A select group of NAR employees can access this data for administrative tasks, such as sending research invitations and tracking relationships between participants like sibling or parent-child connections. Researchers can't access this database, so they can't link survey results with personal contact details.
  2. Survey Answers Database: This contains the responses from participant questionnaires, stored on a different computer. Answers are stored with pseudonyms, meaning personal data is replaced by a number. Only the NAR data-manager knows your assigned number.

Thus, survey data is stored separately from names and email addresses. Researchers can see survey responses but can't identify who filled them out. Any NAR publications never reveal personal information.

Data Retention Policy

  • Personal data is stored once someone fills out the sign-up form on our site.
  • If the registration isn't finalized (e.g., the questionnaire isn't completed), this data is deleted within a year.
  • For completed sign-ups, data is retained for 10 years after the NAR ends. This remains true even if you unsubscribe, due to our study's ongoing nature. This helps prevent duplicate sign-ups.
  • Upon request, we can remove your personal details (like name and email address) after you have unsubscribed. However, data from questionnaires will still be retained for research purposes.
  • To delete specific data, reach out at info@nederlandsautismeregister.nl.

Choosing Not to Participate

We value consistent participation in our study, but understand if you miss filling out a questionnaire. You can skip it without any consequences. Participation is voluntary. You can decide whether or not to join each time you receive an invitation from NAR. If you wish to never fill out a NAR questionnaire again, please let us know by unsubscribing or send us an email at info@nederlandsautismeregister.nl. We won't contact you after that.