Investigating the clinical utility of biomarkers and other novel tests in younger onset neurocognitive disorders: the BeYOND study, protocol for a longitudinal clinical study in a real-world setting

Abstract

Background: Younger-onset dementia (YOD) can be challenging to diagnose due to its younger age of onset, heterogeneous aetiologies and broad range of presentations. Misdiagnosis is common with psychiatric conditions often diagnosed initially and diagnostic delay of five years is common. More information is needed to better understand and diagnose YOD, including the nature of symptom onset, progression of the disease, the relationship between cognition and functional outcomes for patients and carers, imaging changes and novel biomarkers. This paper reports on the background behind the Investigating the clinical utility of biomarkers and other novel tests in younger-onset neurocognitive disorders, the BeYOND study, and its methodology. Methods: BeYOND is a clinically-oriented real-world longitudinal study that follows younger people presenting with an onset of neuropsychiatric symptoms at 65 years or less. We aim to collect information on participants' cognition, neuroimaging, mental health, and blood and cerebrospinal fluid (CSF) biomarkers at 18-month time-points over 3 years. We also aim to collect information regarding the experience of carers and/or family of participants. Conclusion: Serial assessment of symptomatology, cognition, imaging, and blood and CSF biomarkers will be correlated with eventual diagnosis to determine the usefulness of these measures in determining a confident diagnosis. In addition, repeat measurements of the mental health and well-being of the participant and that of their carers/family while they traverse their diagnostic journey will provide important information about service provision and how they can be better supported.

Blood biomarker profiles in young-onset neurocognitive disorders: a cohort study

“…The BeYOND study protocol has been described previously, with participant recruitment from June 2019 to December 2020 and follow-up over one year. 19 For this study, we evaluated cognition, genetics and blood biomarkers with clinical characteristics crosssectionally. This project was approved by the Royal Melbourne Hospital/Melbourne Health Human Research Ethics Committee (MH 2018.371).…”

“…In this study, we sought to address these outstanding questions by analysing the Biomarkers in Younger-Onset Neurocognitive Disorders (BeYOND) cohort 18…”

Carer burden and behavioral disturbance is similar between younger-onset Alzheimer’s disease and behavioral variant frontotemporal dementia

“…Carers who consented to study procedures, completed questionnaires as part of a larger ethically approved study, Biomarkers in younger-onset neurocognitive disorders (BeYOND study) during their clinical Neuropsychiatric admission (Loi et al, 2021) (Melbourne Health Research Ethics Committee 2016.038 and 2018.…”