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Participatory research is a core focus of the NDD GIS

One of the aims of the NDD GIS is to connect research and innovation leaders more closely with the individuals concerned and their families in order to meet their needs and expectations as much as possible. This led to the formation in January 2020 of the thinking Group of Lay Associations for Science (GRAPS) comprised of the representatives of the 12 non-profit organizations that sit on the ASD-NDD French National Council.

The missions of graps

Contribution to the steering of GIS scientific initiatives:
Four representatives of non-profit organizations appointed by and participating in the ASD-NDD French national council, and who are part of GRAPS, sit on the GIS Operational Committee. In this way, the latter is a participatory research mechanism involving researchers, clinicians and representatives of the individuals concerned in the steering and implementation of GIS initiatives.

 Promotion of research projects reflecting the needs of the individuals concerned and their families:
The GIS suggested tasking GRAPS with setting up meeting cycles (1 cycle per year) on issues impacting the individuals concerned and their families. The cross-cutting theme of "Sleep disorders" was chosen for the first cycle of discussions within the GIS. Under the scientific supervision of Professor Carmen Schröder (CHU Strasbourg), this work led to the co-construction, by families, researchers, and clinicians, of the "Sleep disorders and NDD" conference on June 10, 2021, sparking the emergence of new research priorities.

On June 25, 2021, GRAPS initiated the second cycle of reflection on the issue of "Learning disoders". The discussions underway will enable a dedicated conference to be held in 2022, opening up new research prospects.

  • Cycle 2020/2021 : Sleeping disorders and NDD
Find out more
  • Cycle 2021/2022: NDD - learnings throughout lifespan
  • Cycle 2023/2024: TND in adulthood: a challenge for scientific research - better understanding of complex situations, working together to develop each person's abilities - more information coming soon.