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

IF 3.4 2区医学 Q1 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH

Clinical Epidemiology Pub Date : 2023-12-21 DOI:10.2147/clep.s426485

Daniel Hsiang-Te Tsai, J Simon Bell, Shahab Abtahi, Brenda N Baak, Marloes T Bazelier, Ruth Brauer, Adrienne YL Chan, Esther W Chan, Haoqian Chen, Celine SL 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 CY Lau, Kui Kai Lau, Terry YS Lum, Hao Luo, Kenneth KC Man, Jill P Pell, Soko Setoguchi, Shih-Chieh Shao, Chin-Yao Shen, Ju-Young Shin, Patrick C Souverein, Anna-Maija Tolppanen, Li Wei, Ian CK Wong, Edward Chia-Cheng Lai

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引用次数: 0

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.

Keywords: meta-data, data repository, Neurological and Mental Health Global Epidemiology Network, NeuroGEN

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评估和开发神经和精神疾病治疗方法的跨地区数据倡议

目的：描述神经与精神健康全球流行病学网络（NeuroGEN）数据库的详细组成部分并对其进行分类：向北美、欧洲、亚洲和大洋洲 NeuroGEN 的主要研究人员和数据保管人发送了一份 132 项的在线调查问卷。我们根据答复评估了数据特征，包括人口覆盖率、数据跟踪、临床信息、诊断的有效性、药物使用和数据潜伏期。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，我们还使用雷达图从不同角度对数据容量评估进行了可视化分析：结果表明，15 个数据库覆盖了约 3.2 亿人，包括来自澳大利亚、芬兰、韩国、台湾和美国的 7 个全国性索赔数据库，来自香港、苏格兰、台湾、荷兰和英国的 6 个基于人口的电子健康记录数据库，以及来自台湾和英国的 2 个生物医学数据库：结论：这 15 个数据库显示出使用通用数据模型的联合网络方法的巨大潜力。我们的研究为那些寻求利用真实世界数据促进当前评估和未来开发神经和精神疾病治疗方法的人提供了可公开访问的这些数据库的信息。关键词：元数据、数据存储库、神经和精神健康全球流行病学网络、NeuroGEN

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来源期刊

Clinical Epidemiology Medicine-Epidemiology

CiteScore

6.30

自引率

5.10%

发文量

169

审稿时长

16 weeks

期刊介绍： Clinical Epidemiology is an international, peer reviewed, open access journal. Clinical Epidemiology focuses on the application of epidemiological principles and questions relating to patients and clinical care in terms of prevention, diagnosis, prognosis, and treatment. Clinical Epidemiology welcomes papers covering these topics in form of original research and systematic reviews. Clinical Epidemiology has a special interest in international electronic medical patient records and other routine health care data, especially as applied to safety of medical interventions, clinical utility of diagnostic procedures, understanding short- and long-term clinical course of diseases, clinical epidemiological and biostatistical methods, and systematic reviews. When considering submission of a paper utilizing publicly-available data, authors should ensure that such studies add significantly to the body of knowledge and that they use appropriate validated methods for identifying health outcomes. The journal has launched special series describing existing data sources for clinical epidemiology, international health care systems and validation studies of algorithms based on databases and registries.