Olden Matthias, Holle Rolf, Heid Iris M, Stark Klaus
Department of Genetic Epidemiology, Institute of Epidemiology and Preventive Medicine, University of Regensburg, Regensburg, Germany.
Institute of Health Economics and Health Care Management, Helmholtz Zentrum Munich, Neuherberg, Germany.
BMC Med Res Methodol. 2016 Sep 15;16:120. doi: 10.1186/s12874-016-0222-3.
Creating study identifiers and assigning them to study participants is an important feature in epidemiologic studies, ensuring the consistency and privacy of the study data. The numbering system for identifiers needs to be random within certain number constraints, to carry extensions coding for organizational information, or to contain multiple layers of numbers per participant to diversify data access. Available software can generate globally-unique identifiers, but identifier-creating tools meeting the special needs of epidemiological studies are lacking. We have thus set out to develop a software program to generate IDs for epidemiological or clinical studies.
Our software IDGenerator creates unique identifiers that not only carry a random identifier for a study participant, but also support the creation of structured IDs, where organizational information is coded into the ID directly. This may include study center (for multicenter-studies), study track (for studies with diversified study programs), or study visit (baseline, follow-up, regularly repeated visits). Our software can be used to add a check digit to the ID to minimize data entry errors. It facilitates the generation of IDs in batches and the creation of layered IDs (personal data ID, study data ID, temporary ID, external data ID) to ensure a high standard of data privacy. The software is supported by a user-friendly graphic interface that enables the generation of IDs in both standard text and barcode 128B format.
Our software IDGenerator can create identifiers meeting the specific needs for epidemiologic or clinical studies to facilitate study organization and data privacy. IDGenerator is freeware under the GNU General Public License version 3; a Windows port and the source code can be downloaded at the Open Science Framework website: https://osf.io/urs2g/ .
创建研究标识符并将其分配给研究参与者是流行病学研究的一项重要功能,可确保研究数据的一致性和隐私性。标识符的编号系统需要在一定的数字约束范围内随机生成,以便携带用于组织信息的扩展编码,或者为每个参与者包含多层数字以实现数据访问的多样化。现有的软件可以生成全球唯一标识符,但缺乏满足流行病学研究特殊需求的标识符创建工具。因此,我们着手开发一个软件程序,用于为流行病学或临床研究生成标识符。
我们的软件IDGenerator创建的唯一标识符不仅为研究参与者携带随机标识符,还支持创建结构化标识符,其中组织信息直接编码到标识符中。这可能包括研究中心(用于多中心研究)、研究轨迹(用于具有多样化研究方案的研究)或研究访视(基线、随访、定期重复访视)。我们的软件可用于为标识符添加校验位,以尽量减少数据输入错误。它便于批量生成标识符以及创建分层标识符(个人数据标识符、研究数据标识符、临时标识符、外部数据标识符),以确保高标准的数据隐私。该软件由用户友好的图形界面支持,能够以标准文本和条形码128B格式生成标识符。
我们的软件IDGenerator可以创建满足流行病学或临床研究特定需求的标识符,以促进研究组织和数据隐私。IDGenerator是根据GNU通用公共许可证第3版发布的免费软件;可以在开放科学框架网站:https://osf.io/urs2g/ 上下载Windows端口和源代码。