Research database

All research data collected and processed within the framework of projects funded by COFONI that are relevant for reuse are modeled and provided with metadata according to the common FAIR criteria (findable,  accessible, interoperable, and reusable) for research data management in accordance with good scientific practice, so that they are available to all researchers in the COFONI research network. For this purpose, a database infrastructure that can be used jointly within COFONI was set up by the two university hospitals involved, UMG and MHH. Further expansion will take  place on a demand-oriented basis and in close coordination with the “Zukunftslabor Gesundheit“ of  the Centre for Digital Innovations Lower Saxony (ZDIN). The models of the national GECCO data set are the basis for this. Information and data models that go beyond the GECCO data set will be jointly adapted. 

_{Illustration: Simplified representation of the idea of the research database}

Applicant researchers must seek advice in advance from the contact persons at the research  database regarding the necessary data and analysis infrastructure and, if they have wishes and  requirements that go beyond the basic infrastructure, they must include appropriate funding in their  project applications. The close coordination with the research database ensures a harmonisation of  data sets and enables widespread further use within the COFONI network. Existing data can be used  for new application projects. The research database offers to create appropriate tools (digital  questionnaires, apps) for standardized data collection from study participants. The expenses for this  are to be budgeted for in the applications in coordination with the contact persons of the research  database. 

Wherever possible, existing standards are used to describe the data (metadata). In close coordination with the researchers, data models will be agreed upon, implemented, and maintained in accordance with the HiGHmed data governance model.⁶ In this context, the researchers are responsible for providing the content and checking the technical aspects of new data models. In the further course of the project, query and filter tools will be developed and made available to researchers on the basis of the standardised data models, as will the export into common data formats for analyses and the import  of results. For the execution  of computationally intensive data analyses, existing high- performance computers will be used as needed, or existing systems will be upgraded, operated, and made available. In the spirit of good scientific practice, the FAIR criteria will also be applied to analyses and their execution environments. For this purpose, in addition to common version control systems with internal and public domains, virtualisation options will also be provided and managed via container technologies. 

Research Data Platform 

The COFONI Research Data Platform is a secure, extensible, and interoperable platform for providing COVID-19 research data. 

With this platform, the COFONI network promotes the translational idea of the network by providing researchers with a tool for reuse of structured COVID-19 research datasets from funded projects. These include clinical data (e.g., laboratory values, medical history/therapy data, and findings) as well as non-identifiable personal and interview data, e.g., social status, occupational status, and biography. 

The data are available in anonymized form and can be requested by researchers for subsequent use. A graphical user interface can be used to compile cohorts and identify the number of cases. Hereafter, the created cohorts can be linked to a data use application. The data use application is then reviewed by a Use & Access Committee and, once approved, the requested data can be exported directly via the user portal in common file formats (.csv/ .json). 

_{6 Wulff et al (2018), Stud Health Technol Inform, https://pubmed.ncbi.nlm.nih.gov/29726437}

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Terms of Use of the Research Database Technology Platform

The research database in COFONI is able to provide a secure, extensible and interoperable platform for the provision of research data on COVID-19, while meeting all ethical and data protection requirements.

The aim of these terms of use is to enable and promote the scientific use of the data collected on the basis of a funding from the COVID-19 Research Network Lower Saxony and stored in the research database.

The terms of use are an elementary component of the central governance of the research database in COFONI. Due to the special requirements for the protection of the rights of the study participants and the high scientific value of the existing data, planned accesses to this data must be weighed up particularly strictly with regard to the objectives and the achievable benefits. COFONI provides a neutral Use & Access Committee (UAC) that performs this task strictly according to transparent criteria. The regulations apply to all COFONI-funded projects and COFONI use projects.