The Dutch Autism Register has launched the ABOUT project, a multi-cohort initiative focused on structurally embedding experiential knowledge in health research. The ABOUT project builds on the established way of working of the Dutch Autism Register (NAR), part of Amsterdam Cohort Hub.

Since 2013, NAR has worked closely with people with autism, their relatives and advocacy organisations. Within this approach, people with lived experience actively contribute to decisions about research priorities, the formulation of research questions and the interpretation and use of results. This long-standing co-creation model has been a key strength of the NAR.

With ABOUT, this proven approach is expanded to other groups of people who think and learn differently, such as people with ADHD, dyslexia, language development disorders and other forms of neurodivergence. This is done in collaboration with two other Amsterdam Cohort Hub cohorts: In Kaart and the Netherlands Twin Register (NTR).

Objectives

The project has two core objectives. First, to structurally embed experiential knowledge in cohort research, ensuring that people from the target population actively contribute to decisions about relevant research themes, research design and the use of findings. Second, to improve data sharing by developing a secure and harmonised data infrastructure, enabling data to be collected and compared consistently across multiple cohorts.

The ABOUT project enables more inclusive research practices and allows data to be collected and compared consistently across multiple cohorts.

Involved in the ABOUT project

Sander Begeer, Kim Jonkman, Alex van der Jagt, Tinca Polderman, Vincent van Loenen, Melanie de Wit, Franca Leeuwis, Emiel Hoogendijk, Karin van den Bosch, Carlo Schuengel, Meike Bartels, Andreas Daffertshofer.

More information about the ABOUT project: https://nar.vu.nl/nl/about