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首页> 外文期刊>Alcohol >Implementation of a shared data repository and common data dictionary for fetal alcohol spectrum disorders research.
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Implementation of a shared data repository and common data dictionary for fetal alcohol spectrum disorders research.

机译：实施共享数据存储库和公共数据字典以进行胎儿酒精光谱异常研究。

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Many previous attempts by fetal alcohol spectrum disorders researchers to compare data across multiple prospective and retrospective human studies have failed because of both structural differences in the collected data and difficulty in coming to agreement on the precise meaning of the terminology used to describe the collected data. Although some groups of researchers have an established track record of successfully integrating data, attempts to integrate data more broadly among different groups of researchers have generally faltered. Lack of tools to help researchers share and integrate data has also hampered data analysis. This situation has delayed improving diagnosis, intervention, and treatment before and after birth. We worked with various researchers and research programs in the Collaborative Initiative on Fetal Alcohol Spectrum Disorders (CI-FASD) to develop a set of common data dictionaries to describe the data to be collected, including definitions of terms and specification of allowable values. The resulting data dictionaries were the basis for creating a central data repository (CI-FASD Central Repository) and software tools to input and query data. Data entry restrictions ensure that only data that conform to the data dictionaries reach the CI-FASD Central Repository. The result is an effective system for centralized and unified management of the data collected and analyzed by the initiative, including a secure, long-term data repository. CI-FASD researchers are able to integrate and analyze data of different types, using multiple methods, and collected from multiple populations, and data are retained for future reuse in a secure, robust repository.
机译：由于收集数据的结构差异以及难以就用于描述收集数据的术语的精确含义达成一致，胎儿酒精光谱失调研究人员之前进行的许多前瞻性和回顾性人类研究数据比较的许多尝试均以失败告终。尽管某些研究人员群体已经建立了成功整合数据的良好记录，但尝试在不同研究人员群体中更广泛地整合数据的尝试通常失败了。缺乏帮助研究人员共享和整合数据的工具也阻碍了数据分析。这种情况延迟了出生前后诊断，干预和治疗的改善。我们与胎儿酒精频谱疾病协作计划（CI-FASD）中的各种研究人员和研究计划合作，开发了一套通用数据字典来描述要收集的数据，包括术语的定义和允许值的规范。生成的数据字典是创建中央数据存储库（CI-FASD中央存储库）和用于输入和查询数据的软件工具的基础。数据输入限制可确保只有符合数据字典的数据才能到达CI-FASD中央存储库。结果是一个有效的系统，用于集中和统一管理该计划收集和分析的数据，包括安全的长期数据存储库。 CI-FASD的研究人员能够使用多种方法集成和分析不同类型的数据，并从多个总体中收集数据，并将这些数据保留下来，以备将来在安全，强大的存储库中重复使用。

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