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Research Article: Cohort profile: The Scottish SHARE Mental Health (SHARE-MH) cohort – linkable survey, genetic and routinely collected data for mental health research

Date Published: 2024-01-12

Abstract:
Purpose The SHARE Mental Health (SHARE-MH) cohort was established to address the paucity of clinical and genetic data available for mental health research. The cohort brings together detailed mental health questionnaire responses, routinely collected electronic health data and genetic data to provide researchers with an unprecedented linkable dataset. This combination of data sources allows researchers to track mental health longitudinally, across multiple settings. It will be of interest to researchers investigating the genetic and environmental determinants of mental health, the experiences of those interacting with healthcare services, and the overlap between self-reported and clinically derived mental health outcomes. Participants The cohort consists of individuals sampled from the Scottish Health Research Register (SHARE). To register for SHARE, individuals had to be over the age of 16 years and living in Scotland. Cohort participants were recruited by email and invited to take part in an online mental health survey. When signing up for SHARE, participants also provided written consent to the use of their electronic health records and genetic data—derived from spare blood samples—for research purposes. Findings to date From 5 February 2021 to 27 November 2021, 9829 individuals completed a survey of various mental health topics, capturing information on symptoms, diagnoses, impact and treatment. Survey responses have been made linkable to electronic health records and genetic data using a single patient identifier. Linked data have been used to describe the cohort in terms of their demographics, self-reported mental health, inpatient and outpatient hospitalisations and dispensed prescriptions. Future plans The cohort will be improved through linkage to a broader variety of routinely collected data and to increasing amounts of genetic data obtained through blood sample diversion. We see the SHARE-MH cohort being used to drive forward novel areas of mental health research and to contribute to global efforts in psychiatric genetics.

Introduction:
Mental ill health is a major public health concern, and mental health conditions are among the leading causes of disease burden across the world. 1 There is growing research interest in mental ill health and its causes and consequences. However, these endeavours are frequently hampered by an inadequate data landscape in terms of availability, transparency and usability. 2 It is recognised that more and better mental health data is needed in order to improve our understanding of mental health conditions and to…

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