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Related Concept Videos

Autism Spectrum Disorder01:19

Autism Spectrum Disorder

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Autism spectrum disorder (ASD) is a neurodevelopmental condition marked by persistent deficits in social communication and interaction alongside restrictive and repetitive behaviors or interests. ASD is sometimes accompanied by intellectual impairment.
These core symptoms manifest differently among individuals, ranging from mild to severe. The disorder's complexity extends beyond its clinical presentation, encompassing a diverse range of biological, cognitive, and sociocultural influences.
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Community Priority setting for Fetal Alcohol Spectrum Disorder Research in Australia.

A Finlay-Jones1, M Symons1, W Tsang2

  • 1Telethon Kids Institute, NHMRC FASD Research Australia Centre of Research Excellence, Nedlands, Western Australia, Australia.

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|May 26, 2021
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Summary

Community input is crucial for guiding Fetal Alcohol Spectrum Disorder (FASD) research in Australia. This study identified key priorities in prevention, diagnosis, and therapy, highlighting the need for a national research network.

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Area of Science:

  • Neurodevelopmental Disorders
  • Public Health Research
  • Community Engagement in Science

Background:

  • Fetal Alcohol Spectrum Disorder (FASD) is a significant neurodevelopmental disorder resulting from prenatal alcohol exposure (PAE).
  • The field of FASD research is expanding rapidly across various disciplines.
  • Engaging the community, including individuals with FASD and their families, is essential for ensuring research relevance and impact.

Purpose of the Study:

  • To identify community-defined research priorities for FASD and alcohol use in pregnancy in Australia.
  • To gather perspectives from individuals with FASD, caregivers, service providers, and the general public.
  • To provide an overview of current research in the highest-priority areas identified by the community.

Main Methods:

  • A mixed-methods approach involving two community surveys (n=146, n=45) and a consensus workshop (n=21).
  • Qualitative thematic analysis of survey responses to identify key themes.
  • A rapid literature review was conducted on the top ten priority areas identified through community consensus.

Main Results:

  • Diverse research priorities were identified across prevention, diagnosis, and therapy for FASD.
  • Separate priority lists were developed for Aboriginal and non-Aboriginal participants upon request.
  • Key themes emerged regarding the need for improved understanding and support for individuals with FASD.

Conclusions:

  • There is a clear need for community-driven research to address identified FASD priorities.
  • A national network of researchers is required to advance FASD research based on community input.
  • Continued collaboration between researchers and the FASD community is vital for progress.