Department of Medical Data Science, Leipzig University Medical Center, Leipzig, Germany.
Institute for Medical Informatics, Statistics, and Epidemiology, Leipzig University, Leipzig, Germany.
Methods Inf Med. 2022 Dec;61(S 02):e103-e115. doi: 10.1055/a-1914-1985. Epub 2022 Aug 1.
Clinical trials, epidemiological studies, clinical registries, and other prospective research projects, together with patient care services, are main sources of data in the medical research domain. They serve often as a basis for secondary research in evidence-based medicine, prediction models for disease, and its progression. This data are often neither sufficiently described nor accessible. Related models are often not accessible as a functional program tool for interested users from the health care and biomedical domains.
The interdisciplinary project Leipzig Health Atlas (LHA) was developed to close this gap. LHA is an online platform that serves as a sustainable archive providing medical data, metadata, models, and novel phenotypes from clinical trials, epidemiological studies, and other medical research projects.
Data, models, and phenotypes are described by semantically rich metadata. The platform prefers to share data and models presented in original publications but is also open for nonpublished data. LHA provides and associates unique permanent identifiers for each dataset and model. Hence, the platform can be used to share prepared, quality-assured datasets and models while they are referenced in publications. All managed data, models, and phenotypes in LHA follow the FAIR principles, with public availability or restricted access for specific user groups.
The LHA platform is in productive mode (https://www.health-atlas.de/). It is already used by a variety of clinical trial and research groups and is becoming increasingly popular also in the biomedical community. LHA is an integral part of the forthcoming initiative building a national research data infrastructure for health in Germany.
临床试验、流行病学研究、临床注册和其他前瞻性研究项目,以及医疗保健服务,是医学研究领域数据的主要来源。它们经常作为循证医学、疾病预测模型及其进展的二次研究的基础。这些数据通常描述不充分,也不容易获取。相关模型通常也不能作为医疗保健和生物医学领域感兴趣用户的功能程序工具使用。
跨学科项目莱比锡健康图谱(LHA)的开发就是为了弥补这一空白。LHA 是一个在线平台,作为一个可持续的档案,提供来自临床试验、流行病学研究和其他医学研究项目的数据、元数据、模型和新的表型。
数据、模型和表型通过语义丰富的元数据进行描述。该平台倾向于共享原始出版物中呈现的数据和模型,但也对非公开数据开放。LHA 为每个数据集和模型提供并关联唯一的永久标识符。因此,该平台可用于共享经过准备和质量保证的数据集和模型,同时在出版物中引用。LHA 中管理的所有数据、模型和表型都遵循 FAIR 原则,公共可用性或对特定用户组的受限访问。
LHA 平台处于生产模式(https://www.health-atlas.de/)。它已经被各种临床试验和研究小组使用,在生物医学社区也越来越受欢迎。LHA 是德国即将建立国家健康研究数据基础设施倡议的组成部分。