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

Kelsie A. Boulton; David Coghill; Natalie Silove; Elizabeth Pellicano; Andrew J. O. Whitehouse; Mark A. Bellgrove; Nicole J. Rinehart; Suncica Lah; Marie‐Antoinette Redoblado-Hodge; Nadia Badawi; Helen Heussler; Nicole Rogerson; Joshua Burns; Michelle A. Farrar; Ralph Nanan; Iona Novak; Micah B. Goldwater; Natalie Munro; Leanne Togher; Natasha Nassar; Phillipa Quinn; Christel M. Middeldorp; Adam J. Guastella

doi:10.1002/jcv2.12048

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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

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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 A. Boulton, David Coghill, Natalie Silove, Elizabeth Pellicano, Andrew J. O. Whitehouse, Mark A. Bellgrove, Nicole J. Rinehart, Suncica Lah, Marie‐Antoinette Redoblado-Hodge, Nadia Badawi, …

JCPP advances, Vol.1(4), e12048

12/2021

DOI: https://doi.org/10.1002/jcv2.12048

PMID: 37431407

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Abstract

clinical practice

data sharing

harmonisation

mental health

neurodevelopmental disorders

transdiagnostic

Background Children with neurodevelopmental disorders share common phenotypes, support needs and comorbidities. Such overlap suggests the value of transdiagnostic assessment pathways that contribute to knowledge about research and clinical needs of these children and their families. Despite this, large transdiagnostic data collection networks for neurodevelopmental disorders are not well developed. This paper describes the development of a nationally supported transdiagnostic clinical and research assessment protocol across Australia. The vision is to establish a harmonised network for data collection and collaboration that promotes transdiagnostic clinical practice and research. Methods Clinicians, researchers and community groups across Australia were consulted using surveys and national summits to identify assessment instruments and unmet needs. A national research committee was formed and, using a consensus approach, selected assessment instruments according to pre-determined criteria to form a harmonised transdiagnostic assessment protocol. Results Identified assessment instruments were clustered into domains of transdiagnostic assessment needs, which included child functioning/quality of life, child mental health, caregiver mental health, and family background information. From this, the research committee identified a core set of nine measures and an extended set of 14 measures that capture these domains with potential for further modifications as recommended by clinicians, researchers and community members. Conclusion 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.

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Title: A national harmonised data collection network for neurodevelopmental disorders: A transdiagnostic assessment protocol for neurodevelopment, mental health, functioning and well‐being
Creators: Kelsie A. Boulton - University of Sydney
David Coghill - University of Melbourne
Natalie Silove - University of Sydney
Elizabeth Pellicano - Macquarie University
Andrew J. O. Whitehouse - University of Western Australia
Mark A. Bellgrove - Monash University
Nicole J. Rinehart - Monash University
Suncica Lah - University of Sydney
Marie‐Antoinette Redoblado-Hodge - University of Sydney
Nadia Badawi - University of Sydney
Helen Heussler - University of Queensland
Nicole Rogerson - Neurodevelopment Australia (Sydney, Australia)
Joshua Burns - University of Sydney
Michelle A. Farrar - University of New South Wales
Ralph Nanan - University of Sydney
Iona Novak - University of Sydney
Micah B. Goldwater - University of Sydney
Natalie Munro - University of Sydney
Leanne Togher - University of Sydney
Natasha Nassar - University of Sydney
Phillipa Quinn - Neurodevelopment Australia (Sydney, Australia)
Christel M. Middeldorp - University of Queensland
Adam J. Guastella - University of Sydney
Publication Details: JCPP advances, Vol.1(4), e12048
Publisher: Wiley-Blackwell Publishing Ltd.
Number of pages: 16
Grant note: Brain and Mind Centre Child Neurodevelopment and Mental Health team
Identifiers: 991013176702502368
Copyright: © 2021 The Authors. JCPP Advances published by John Wiley & Sons Ltd on behalf of Association for Child and Adolescent Mental Health. This is an open access article under the terms of the Creative Commons Attribution License.
Academic Unit: Faculty of Health
Language: English
Resource Type: Journal article

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

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