دورية أكاديمية

The Journey of Data Within a Global Data Sharing Initiative: A Federated 3-Layer Data Analysis Pipeline to Scale Up Multiple Sclerosis Research

التفاصيل البيبلوغرافية
العنوان: The Journey of Data Within a Global Data Sharing Initiative: A Federated 3-Layer Data Analysis Pipeline to Scale Up Multiple Sclerosis Research
المؤلفون: Ashkan Pirmani, Edward De Brouwer, Lotte Geys, Tina Parciak, Yves Moreau, Liesbet M Peeters
المصدر: JMIR Medical Informatics, Vol 11, p e48030 (2023)
بيانات النشر: JMIR Publications, 2023.
سنة النشر: 2023
المجموعة: LCC:Computer applications to medicine. Medical informatics
مصطلحات موضوعية: Computer applications to medicine. Medical informatics, R858-859.7
الوصف: BackgroundInvestigating low-prevalence diseases such as multiple sclerosis is challenging because of the rather small number of individuals affected by this disease and the scattering of real-world data across numerous data sources. These obstacles impair data integration, standardization, and analysis, which negatively impact the generation of significant meaningful clinical evidence. ObjectiveThis study aims to present a comprehensive, research question–agnostic, multistakeholder-driven end-to-end data analysis pipeline that accommodates 3 prevalent data-sharing streams: individual data sharing, core data set sharing, and federated model sharing. MethodsA demand-driven methodology is employed for standardization, followed by 3 streams of data acquisition, a data quality enhancement process, a data integration procedure, and a concluding analysis stage to fulfill real-world data-sharing requirements. This pipeline’s effectiveness was demonstrated through its successful implementation in the COVID-19 and multiple sclerosis global data sharing initiative. ResultsThe global data sharing initiative yielded multiple scientific publications and provided extensive worldwide guidance for the community with multiple sclerosis. The pipeline facilitated gathering pertinent data from various sources, accommodating distinct sharing streams and assimilating them into a unified data set for subsequent statistical analysis or secure data examination. This pipeline contributed to the assembly of the largest data set of people with multiple sclerosis infected with COVID-19. ConclusionsThe proposed data analysis pipeline exemplifies the potential of global stakeholder collaboration and underlines the significance of evidence-based decision-making. It serves as a paradigm for how data sharing initiatives can propel advancements in health care, emphasizing its adaptability and capacity to address diverse research inquiries.
نوع الوثيقة: article
وصف الملف: electronic resource
اللغة: English
تدمد: 2291-9694
Relation: https://medinform.jmir.org/2023/1/e48030; https://doaj.org/toc/2291-9694
DOI: 10.2196/48030
URL الوصول: https://doaj.org/article/9fa2536138e84651a25c49c905bfebf4
رقم الأكسشن: edsdoj.9fa2536138e84651a25c49c905bfebf4
قاعدة البيانات: Directory of Open Access Journals
الوصف
تدمد:22919694
DOI:10.2196/48030