神经和精神疾病治疗评估与发展跨区域数据倡议
Cross-Regional Data Initiative for the Assessment and Development of Treatment for Neurological and Mental Disorders.
作者信息
Tsai Daniel Hsiang-Te, Bell J Simon, Abtahi Shahab, Baak Brenda N, Bazelier Marloes T, Brauer Ruth, Chan Adrienne Y L, Chan Esther W, Chen Haoqian, Chui Celine S L, Cook Sharon, Crystal Stephen, Gandhi Poonam, Hartikainen Sirpa, Ho Frederick K, Hsu Shao-Ti, Ilomäki Jenni, Kim Ju Hwan, Klungel Olaf H, Koponen Marjaana, Lau Wallis C Y, Lau Kui Kai, Lum Terry Y S, Luo Hao, Man Kenneth K C, Pell Jill P, Setoguchi Soko, Shao Shih-Chieh, Shen Chin-Yao, Shin Ju-Young, Souverein Patrick C, Tolppanen Anna-Maija, Wei Li, Wong Ian C K, Lai Edward Chia-Cheng
机构信息
School of Pharmacy, Institute of Clinical Pharmacy and Pharmaceutical Sciences, College of Medicine, National Cheng Kung University, Tainan, Taiwan.
Centre for Neonatal and Paediatric Infection, St George's University of London, London, UK.
出版信息
Clin Epidemiol. 2023 Dec 21;15:1241-1252. doi: 10.2147/CLEP.S426485. eCollection 2023.
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.
目的
描述并分类神经与精神健康全球流行病学网络（NeuroGEN）中数据库的详细组成部分。
方法
向北美、欧洲、亚洲和大洋洲的NeuroGEN主要研究人员和数据保管人发送了一份包含132个条目的在线调查问卷。根据回复，我们评估了数据特征，包括人群覆盖范围、数据随访、临床信息、诊断有效性、药物使用情况和数据延迟。我们还评估了转换为通用数据模型（CDM）以实施联合网络方法的可能性。此外，我们使用雷达图从不同角度直观展示数据容量评估结果。
结果
结果表明，这15个数据库覆盖了约3.2亿人，其中包括来自澳大利亚、芬兰、韩国、台湾地区和美国的7个全国性索赔数据库，来自香港、苏格兰、台湾地区、荷兰和英国的6个基于人群的电子健康记录数据库，以及来自台湾地区和英国的2个生物医学数据库。
结论
这15个数据库显示出采用通用数据模型实施联合网络方法的良好潜力。我们的研究为那些寻求利用真实世界数据促进神经和精神疾病当前评估及未来治疗发展的人提供了关于这些数据库的公开可用信息。
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