Making COVID-19 research data more accessible-building a nationwide information infrastructure

被引:0
作者
Schmidt, Carsten Oliver [1 ]
Fluck, Juliane [2 ,3 ,4 ]
Golebiewski, Martin [5 ]
Grabenhenrich, Linus [6 ]
Hahn, Horst [7 ,8 ]
Kirsten, Toralf [9 ,10 ]
Klammt, Sebastian [11 ]
Loebe, Matthias [12 ]
Sax, Ulrich [13 ]
Thun, Sylvia [14 ]
Pigeot, Iris [15 ,16 ]
机构
[1] Univ Med Greifswald, Inst Community Med, Walther Rathenau Str 48, D-17475 Greifswald, Germany
[2] ZB Med Informationszentrum Lebenswissensch, Bonn, Germany
[3] Rhein Friedrich Wilhelms Univ Bonn, Inst Geodasie & Geoinformat, Bonn, Germany
[4] Fraunhofer Inst SCAI, Abt Bioinformat, St Augustin, Germany
[5] Heidelberger Inst Theoret Studien HITS, Heidelberg, Germany
[6] Robert Koch Inst, Berlin, Germany
[7] Fraunhofer MEVIS, Inst Digitale Med, Bremen, Germany
[8] Jacobs Univ, Bremen, Germany
[9] Hsch Mittweida, Fak Angew Comp & Biowissensch, Mittweida, Germany
[10] Univ Med Leipzig, Inst Med Data Sci, Leipzig, Germany
[11] Netzwerk Koordinierungszentren Klin Studien KKS N, Berlin, Germany
[12] Univ Leipzig, Inst Med Informat Stat & Epidemiol IMISE, Leipzig, Germany
[13] Univ Med Gottingen, Inst Med Informat, Gottingen, Germany
[14] Univ Med Gottingen, Berlin Inst Hlth Charite, Berlin, Germany
[15] Leibniz Inst Praventionsforsch & Epidemiol BIPS, Bremen, Germany
[16] Univ Bremen, Fachbereich Math & Informat, Bremen, Germany
关键词
COVID-19 study portal; FAIR principles; Epidemiology; Public health; Clinical trials;
D O I
10.1007/s00103-021-03386-x
中图分类号
R1 [预防医学、卫生学];
学科分类号
1004 ; 120402 ;
摘要
Public health research and epidemiological and clinical studies are necessary to understand the COVID-19 pandemic and to take appropriate action. Therefore, since early 2020, numerous research projects have also been initiated in Germany. However, due to the large amount of information, it is currently difficult to get an overview of the diverse research activities and their results. Based on the "Federated research data infrastructure for personal health data" (NFDI4Health) initiative, the "COVID-19 task force" is able to create easier access to SARS-CoV-2- and COVID-19-related clinical, epidemiological, and public health research data. Therefore, the so-called FAIR data principles (findable, accessible, interoperable, reusable) are taken into account and should allow an expedited communication of results. The most essential work of the task force includes the generation of a study portal with metadata, selected instruments, other study documents, and study results as well as a search engine for preprint publications. Additional contents include a concept for the linkage between research and routine data, a service for an enhanced practice of image data, and the application of a standardized analysis routine for harmonized quality assessment. This infrastructure, currently being established, will facilitate the findability and handling of German COVID-19 research. The developments initiated in the context of the NFDI4Health COVID-19 task force are reusable for further research topics, as the challenges addressed are generic for the findability of and the handling with research data.
引用
收藏
页码:1084 / 1092
页数:9
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