The ongoing French BaMaRa-BNDMR cohort: implementation and deployment of a nationwide information system on rare disease
The ongoing French BaMaRa-BNDMR cohort: implementation and deployment of a nationwide information system on rare disease
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DOI：
10.1093/jamia/ocab237
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发表时间：
2021-11-06
影响因子：
6.4
通讯作者：
Sandrin, Arnaud
中科院分区：
文献类型：
--
作者：
Jannot, Anne-Sophie;Messiaen, Claude;Sandrin, Arnaud
背景Bamara允许基于最小数据集(SDM-MR)在法国的罕见病专家网络中对所有患者的医疗数据进行安全收集和识别集中。本文描述了2015-2020年期间巴马拉信息系统在全国各地的实施和发展，以及通过集中所有巴马拉数据的数据仓库BNDMR提出的数据访问请求。材料和方法SDM-MR由60个可互操作的项目组成，作为护理的一部分，常规通过Bamara在罕见病中心收集，并在识别和数据核对后出院到BNDMR。数据访问由一个科学委员会管理。结果截至2020年底，共有668 002名受影响的患者在BNDMR中记录了SDM-MR，平均每个患者有3.4次活动。为66个项目提供了数据接入。结论Bamara-BNDMR基础设施为法国罕见病提供了管理和流行病学资源。
Background BaMaRa allows the secure collection and deidentified centralization of medical data from all patients followed-up in a rare disease expert network in France, based on a minimum data set (SDM-MR). The present article describes BaMaRa information system implementation and development across the whole national territory as well as data access requests through BNDMR, the data warehouse which centralizes all BaMaRa data, during the 2015-2020 period. Materials and Methods SDM-MR is made up of 60 interoperable items and is routinely collected through BaMaRa in rare disease centers as part of care and discharged into BNDMR after deidentification and data reconciliation. Data access is regulated by a scientific committee. Results In total, 668 002 affected patients had an SDM-MR recorded in BNDMR by the end of 2020 with a mean value of 3.4 activities per patients. Data access was provided for 66 projects. Conclusion The BaMaRa-BNDMR infrastructure provides an administrative and epidemiological resources for rare diseases in France.