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February 16, 2026Developmental Medicine & Child NeurologyOpen Access

Consensus‐based follow‐up and treatment registry for GNAO1 ‐associated disorder

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Authors

LHLarissa R. HeidemanNWN. WolfMTMoritz Thiel

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Overview

Mixed-methods study recommends assessment instruments and ICF domains for GNAO1 registry, indicating better consensus for clinical trials.

Key Points

  • To establish consensus-based recommendations for a GNAO1-associated disorder follow-up and treatment registry.
  • Mixed-methods study conducted including a systematic literature search, survey, and Delphi procedure.
  • Involvement of health care professionals and individuals with lived experience in gathering data.
  • The International Classification of Functioning, Disability and Health (ICF) used as a framework.
  • 67 statements identified in the Delphi procedure, covering 19 domains and 48 assessment instruments.
  • Panel consisted of 27 health care professionals and 10 parents.
  • 17 ICF domains and 26 assessment instruments recommended, focusing on 'Body Structures & Functions' and 'Activities & Participation'.

Cite This Study

Heideman et al. (2026) studied this question.

synapsesocial.com/papers/699264d1eb1f82dc367a0b54https://doi.org/10.1111/dmcn.70201
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