TY - JOUR
T1 - Cross-Regional Data Initiative for the Assessment and Development of Treatment for Neurological and Mental Disorders
AU - Tsai, Daniel Hsiang-Te
AU - Bell, J. Simon
AU - Abtahi, Shahab
AU - Baak, Brenda N.
AU - Bazelier, Marloes T.
AU - Brauer, Ruth
AU - Chan, Adrienne Y. L.
AU - Chan, Esther W.
AU - Chen, Haoqian
AU - Chui, Celine S. L.
AU - Cook, Sharon
AU - Crystal, Stephen
AU - Gandhi, Poonam
AU - Hartikainen, Sirpa
AU - Ho, Frederick K.
AU - Hsu, Shao-Ti
AU - Ilomäki, Jenni
AU - Kim, Ju Hwan
AU - Klungel, Olaf H.
AU - Koponen, Marjaana
AU - Lau, Wallis C. Y.
AU - Lau, Kui Kai
AU - Lum, Terry Y. S.
AU - Luo, Hao
AU - Man, Kenneth K. C.
AU - Pell, Jill P.
AU - Setoguchi, Soko
AU - Shao, Shih-Chieh
AU - Shen, Chin-Yao
AU - Shin, Ju-Young
AU - Souverein, Patrick C.
AU - Tolppanen, Anna-Maija
AU - Wei, Li
AU - Wong, Ian C. K.
AU - Lai, Edward Chia-Cheng
PY - 2023/12/21
Y1 - 2023/12/21
N2 - 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.
AB - 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.
UR - https://www.dovepress.com/cross-regional-data-initiative-for-the-assessment-and-development-of-t-peer-reviewed-fulltext-article-CLEP
UR - http://www.scopus.com/inward/record.url?eid=2-s2.0-85180198304&partnerID=MN8TOARS
U2 - 10.2147/CLEP.S426485
DO - 10.2147/CLEP.S426485
M3 - Article
C2 - 38146486
SN - 1179-1349
VL - 15
SP - 1241
EP - 1252
JO - Clinical Epidemiology
JF - Clinical Epidemiology
ER -