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Neurobiology Youth Follow-up Study: protocol to establish a longitudinal and prospective research database using multimodal assessments for current and past mental health treatment-seeking young people within an early intervention service
  1. Alissa Nichles1,
  2. Natalia Zmicerevska1,
  3. Yun Ju Christine Song1,
  4. Chloe Wilson1,
  5. Catherine McHugh1,
  6. Blake Hamilton1,
  7. Jacob Crouse1,
  8. Cathrin Rohleder1,
  9. Joanne Sarah Carpenter1,
  10. Nicholas Ho1,
  11. Daniel F Hermens2,
  12. Naomi Wray3,4,
  13. Jan Scott5,
  14. Kathleen R Merikangas6,
  15. F Markus Leweke1,
  16. Dagmar Koethe1,
  17. Frank Iorfino1,
  18. Sharon L Naismith1,
  19. Adam J Guastella1,
  20. Elizabeth M Scott7,
  21. Ian B Hickie1
  1. 1Brain and Mind Centre, The University of Sydney, Sydney, New South Wales, Australia
  2. 2Thompson Institute, University of the Sunshine Coast, Maroochydore DC, Queensland, Australia
  3. 3Institute for Molecular Bioscience, University of Queensland, Brisbane, Queensland, Australia
  4. 4Queensland Brain Institute, University of Queensland, Brisbane, Queensland, Australia
  5. 5Institute of Neuroscience, Newcastle University, Newcastle upon Tyne, UK
  6. 6Genetic Epidemiology Research Branch, National Institute of Mental Health, Bethesda, Maryland, USA
  7. 7School of Medicine, The University of Notre Dame Sydney Campus, Darlinghurst, New South Wales, Australia
  1. Correspondence to Alissa Nichles; alissa.nichles{at}


Introduction Approximately 75% of major mental illness occurs before the age of 25 years. Despite this, our capacity to provide effective, early and personalised interventions is limited by insufficient evidence for characterising early-stage, and less specific, presentations of major mental disorders in youth populations. This article describes the protocol for setting up a large-scale database that will collect longitudinal, prospective data that incorporate clinical, social and occupational function, neuropsychological, circadian, metabolic, family history and genetic metrics. By collecting data in a research-purposed, standardised manner, the ‘Neurobiology Youth Follow-up Study’ should improve identification, characterisation and profiling of youth attending mental healthcare, to better inform diagnosis and treatment at critical time points. The overall goal is enhanced long-term clinical and functional outcomes.

Methods and analysis This longitudinal clinical cohort study will invite participation from youth (12–30 years) who seek help for mental health-related issues at an early intervention service (headspace Camperdown) and linked services. Participants will be prospectively tracked over 3 years with a series of standardised multimodal assessments at baseline, 6, 12, 24 and 36 months. Evaluations will include: (1) clinician-administered and self-report assessments determining clinical stage, pathophysiological pathways to illness, diagnosis, symptomatology, social and occupational function; (2) neuropsychological profile; (3) sleep–wake patterns and circadian rhythms; (4) metabolic markers and (5) genetics. These data will be used to: (1) model the impact of demographic, phenomenological and treatment variables, on clinical and functional outcomes; (2) map neurobiological profiles and changes onto a transdiagnostic clinical stage and pathophysiological mechanisms framework.

Ethics and dissemination This study protocol has been approved by the Human Research Ethics Committee of the Sydney Local Health District (2020/ETH01272, protocol V.1.3, 14 October 2020). Research findings will be disseminated through peer-reviewed journals and presentations at scientific conferences and to user and advocacy groups. Participant data will be de-identified.

  • mental health
  • neurobiology
  • depression & mood disorders
  • anxiety disorders
  • schizophrenia & psychotic disorders
  • child & adolescent psychiatry

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  • Contributors IBH conceived the research idea, designed the study and is the principal investigator. AN, YJCS and NZ contributed to the study conception. AN wrote the study protocol with input from IBH, YJCS, NZ, CW, CM, BH, JC, JSC, NW, KRM, JS, NH, FI, SLN, AJG, EMS, FML and DK. AN wrote the manuscript with input from IBH, NZ, YJCS, CW, CM, BH, JC, CR, DFH, JS and KRM.

  • Funding This project is an investigator-initiated trial and will be supported by philanthropic funding, for which donor(s) who are families affected and wish to remain anonymous. IBH is supported by a National Health and Medical Research Council (NHMRC) Senior Principle Research Fellowship grant number 1 136 259.

  • Competing interests IBH was an inaugural Commissioner on Australia’s National Mental Health Commission (2012–2018). He is the co-director, Health and Policy at the Brain and Mind Centre (BMC) University of Sydney. The BMC operates early-intervention youth services at Camperdown under contract to headspace. He is the chief scientific advisor to, and a 5% equity shareholder in, InnoWell. InnoWell was formed by the University of Sydney (45% equity) and PwC (Australia; 45% equity) to deliver the $30 million Australian government-funded Project Synergy (2017–2020; a 3-year programme for the transformation of mental health services) and to lead transformation of mental health services internationally through the use of innovative technologies.

  • Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

  • Provenance and peer review Not commissioned; externally peer reviewed.