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

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

JCPP Adv. 2021 Nov 26;1(4):e12048. doi: 10.1002/jcv2.12048. eCollection 2021 Dec.

Authors

Kelsie A Boulton^{1

2}, David Coghill^{3

4}, Natalie Silove^{2

5}, Elizabeth Pellicano⁶, Andrew J O Whitehouse⁷, Mark A Bellgrove⁸, Nicole J Rinehart⁹, Suncica Lah^{2

10}, Marie-Antoinette Redoblado-Hodge^{2

5}, Nadia Badawi^{2

11

12}, Helen Heussler^{13

14}, Nicole Rogerson¹⁵, Joshua Burns^{2

16}, Michelle A Farrar^{17

18}, Ralph Nanan^{2

19

20}, Iona Novak^{2

11}, Micah B Goldwater^{2

21}, Natalie Munro^{2

22}, Leanne Togher^{2

23}, Natasha Nassar^{2

24}, Phillipa Quinn¹⁵, Christel M Middeldorp^{13

25}, Adam J Guastella^{1

2}

Affiliations

¹ Autism Clinic for Translational Research Brain and Mind Centre Children's Hospital Westmead Clinical School Faculty of Medicine and Health University of Sydney Camperdown New South Wales Australia.
² Child Neurodevelopment and Mental Health Team Brain and Mind Centre Children's Hospital Westmead Clinical School Faculty of Medicine and Health University of Sydney Camperdown New South Wales Australia.
³ Departments of Paediatrics and Psychiatry Faculty of Medicine, Dentistry and Health Sciences University of Melbourne Melbourne Victoria Australia.
⁴ Murdoch Children's Research Institute Melbourne Victoria Australia.
⁵ Child Development Unit The Children's Hospital at Westmead Sydney Children's Hospital Network Westmead New South Wales Australia.
⁶ Macquarie School of Education Macquarie University Sydney New South Wales Australia.
⁷ Telethon Kids Institute University of Western Australia Nedlands Western Australia Australia.
⁸ Turner Institute for Brain and Mental Health School of Psychological Sciences Monash University Clayton Victoria Australia.
⁹ School of Educational Psychology and Counselling Faculty of Education Monash University Clayton Victoria Australia.
¹⁰ School of Psychology University of Sydney Sydney New South Wales Australia.
¹¹ Cerebral Palsy Alliance Research Institute Discipline of Child and Adolescent Health The University of Sydney Sydney New South Wales Australia.
¹² Grace Centre for Newborn Intensive Care The Children's Hospital at Westmead Sydney New South Wales Australia.
¹³ Child Health Research Centre The University of Queensland Brisbane Queensland Australia.
¹⁴ Child Development Program Children's Health Queensland Brisbane Queensland Australia.
¹⁵ Neurodevelopment Australia Sydney New South Wales Australia.
¹⁶ Sydney School of Health Sciences Faculty of Medicine and Health University of Sydney Sydney New South Wales Australia.
¹⁷ Discipline of Paediatrics School of Women's and Children's Health UNSW Medicine University of New South Wales Sydney New South Wales Australia.
¹⁸ Department of Neurology Sydney Children's Hospital Randwick New South Wales Australia.
¹⁹ Sydney Medical School-Nepean Discipline of Paediatrics University of Sydney Sydney New South Wales Australia.
²⁰ Charles Perkins Centre-Nepean The University of Sydney Sydney New South Wales Australia.
²¹ University of Sydney Camperdown New South Wales Australia.
²² Faculty of Medicine and Health University of Sydney Sydney New South Wales Australia.
²³ Department of Speech Pathology Sydney School of Health Sciences Faculty of Medicine and Health The University of Sydney Sydney New South Wales Australia.
²⁴ Child Population and Translational Health Research Children's Hospital at Westmead Clinical School Faculty of Medicine and Health The University of Sydney Sydney New South Wales Australia.
²⁵ Child and Youth Mental Health Service Children's Health Queensland Hospital and Health Service Brisbane Queensland Australia.

Abstract

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.

Keywords: clinical practice; data sharing; harmonisation; mental health; neurodevelopmental disorders; transdiagnostic.