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A national harmonised data collection network for neurodevelopmental disorders: A transdiagnostic assessment protocol for neurodevelopment, mental health, functioning and well-being.

Kelsie Ann BoultonDavid CoghillNatalie SiloveElizabeth PellicanoAndrew J O WhitehouseMark A BellgroveNicole J RinehartSuncica LahMarie-Antoinette Redoblado-HodgeNadia BadawiHelen HeusslerNicole RogersonJoshua BurnsMichelle A FarrarRalph NananIona NovakMicah B GoldwaterNatalie MunroLeanne TogherNatasha NassarPhillipa QuinnChristel M MiddeldorpAdam John Guastella
Published in: JCPP advances (2021)
The protocol proposed here was established through a strong partnership between clinicians, researchers and the community. It will enable (i) consensus driven transdiagnostic clinical assessments for children with neurodevelopmental disorders, and (ii) research studies that will inform large transdiagnostic datasets across neurodevelopmental disorders and that can be used to inform research and policy beyond narrow diagnostic groups. The long-term vision is to use this framework to facilitate collaboration across clinics to enable large-scale data collection and research. Ultimately, the transdiagnostic assessment data can be used to inform practice and improve the lives of children with neurodevelopmental disorders and their families.
Keyphrases
  • mental health
  • healthcare
  • electronic health record
  • primary care
  • randomized controlled trial
  • young adults
  • big data
  • public health
  • quality improvement
  • congenital heart disease
  • mental illness
  • single cell
  • case control