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

  • Daniel Hsiang Te Tsai
  • , J. Simon Bell
  • , Shahab Abtahi
  • , Brenda N. Baak
  • , Marloes T. Bazelier
  • , Ruth Brauer
  • , Adrienne Y.L. Chan
  • , Esther W. Chan
  • , Haoqian Chen
  • , Celine S.L. Chui
  • , Sharon Cook
  • , Stephen Crystal
  • , Poonam Gandhi
  • , Sirpa Hartikainen
  • , Frederick K. Ho
  • , Shao Ti Hsu
  • , Jenni Ilomäki
  • , Ju Hwan Kim
  • , Olaf H. Klungel
  • , Marjaana Koponen
  • Wallis C.Y. Lau, Kui Kai Lau, Terry Y.S. Lum, Hao Luo, Kenneth K.C. Man, Jill P. Pell, Soko Setoguchi, Shih Chieh Shao, Chin Yao Shen, Ju Young Shin, Patrick C. Souverein, Anna Maija Tolppanen, Li Wei, Ian C.K. Wong, Edward Chia Cheng Lai

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish
Pages (from-to)1241-1252
Number of pages12
JournalClinical Epidemiology
Volume15
DOIs
Publication statusPublished - 2023

All Science Journal Classification (ASJC) codes

  • Epidemiology

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