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Cross-Regional Data Initiative for the Assessment and Development of Treatment for Neurological and Mental Disorders

Tsai, DHT; Bell, JS; Baak, BN; Bazelier, MT; Brauer, R; Chan, AYL; Chan, EW; ... Lai, ECC; + view all (2023) Cross-Regional Data Initiative for the Assessment and Development of Treatment for Neurological and Mental Disorders. Clinical Epidemiology , 2023 (15) pp. 1241-1252. 10.2147/CLEP.S426485. Green open access

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Abstract

Purpose: To describe and categorize detailed components of databases in the Neurological and Mental Health Global Epidemiology Network (NeuroGEN). / Methods: An online 132-item questionnaire was sent to key researchers and data custodians of NeuroGEN in North America, Europe, Asia and Oceania. From the responses, we assessed data characteristics including population coverage, data follow-up, clinical information, validity of diagnoses, medication use and data latency. We also evaluated the possibility of conversion into a common data model (CDM) to implement a federated network approach. Moreover, we used radar charts to visualize the data capacity assessments, based on different perspectives. / Results: The results indicated that the 15 databases covered approximately 320 million individuals, included in 7 nationwide claims databases from Australia, Finland, South Korea, Taiwan and the US, 6 population-based electronic health record databases from Hong Kong, Scotland, Taiwan, the Netherlands and the UK, and 2 biomedical databases from Taiwan and the UK. / Conclusion: The 15 databases showed good potential for a federated network approach using a common data model. Our study provided publicly accessible information on these databases for those seeking to employ real-world data to facilitate current assessment and future development of treatments for neurological and mental disorders.

Type: Article
Title: Cross-Regional Data Initiative for the Assessment and Development of Treatment for Neurological and Mental Disorders
Open access status: An open access version is available from UCL Discovery
DOI: 10.2147/CLEP.S426485
Publisher version: https://doi.org/10.2147/CLEP.S426485
Language: English
Additional information: Copyright © 2023 The Author(s). This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution - Non Commercial (unported, v3.0) License (https://creativecommons.org/licenses/by-nc/3.0/). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. For permission for commercial use of this work, please see paragraphs 4.2 and 5 of our Terms.
Keywords: meta-data, data repository, Neurological and Mental Health Global Epidemiology Network, NeuroGEN
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Life Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Life Sciences > UCL School of Pharmacy
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Life Sciences > UCL School of Pharmacy > Practice and Policy
URI: https://discovery-pp.ucl.ac.uk/id/eprint/10184334
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