Facilitating Study and Item Level Browsing for Clinical and Epidemiological COVID-19 Studies.

COVID-19 poses a major challenge to individuals and societies around the world. Yet, it is difficult to obtain a good overview of studies across different medical fields of research such as clinical trials, epidemiology, and public health. Here, we describe a consensus metadata model to facilitate structured searches of COVID-19 studies and resources along with its implementation in three linked complementary web-based platforms. A relational database serves as central study metadata hub that secures compatibilities with common trials registries (e.g. ICTRP and standards like HL7 FHIR, CDISC ODM, and DataCite). The Central Search Hub was developed as a single-page application, the other two components with additional frontends are based on the SEEK platform and MICA, respectively. These platforms have different features concerning cohort browsing, item browsing, and access to documents and other study resources to meet divergent user needs. By this we want to promote transparent and harmonized COVID-19 research.

Multiple Sclerosis Data Alliance - A global multi-stakeholder collaboration to scale-up real world data research.

The Multiple Sclerosis Data Alliance (MSDA), a global multi-stakeholder collaboration, is working to accelerate research insights for innovative care and treatment for people with multiple sclerosis (MS) through better use of real-world data (RWD). Despite the increasing reliance on RWD, challenges and limitations complicate the generation, collection, and use of these data. MSDA aims to tackle sociological and technical challenges arising with scaling up RWD, specifically focused on MS data. MSDA envisions a patient-centred data ecosystem in which all stakeholders contribute and use big data to co-create the innovations needed to advance timely treatment and care of people with MS.

Applying FAIRness: Redesigning a Biomedical Informatics Research Data Management Pipeline.

BACKGROUND: Managing research data in biomedical informatics research requires solid data governance rules to guarantee sustainable operation, as it generally involves several professions and multiple sites. As every discipline involved in biomedical research applies its own set of tools and methods, research data as well as applied methods tend to branch out into numerous intermediate and output data objects, making it very difficult to reproduce research results. OBJECTIVES: This article gives an overview of our implementation status applying the Findability, Accessibility, Interoperability and Reusability (FAIR) Guiding Principles for scientific data management and stewardship onto our research data management pipeline focusing on the software tools that are in use. METHODS: We analyzed our progress FAIRificating the whole data management pipeline, from processing non-FAIR data up to data usage. We looked at software tools for data integration, data storage, and data usage as well as how the FAIR Guiding Principles helped to choose appropriate tools for each task. RESULTS: We were able to advance the degree of FAIRness of our data integration as well as data storage solutions, but lack enabling more FAIR Guiding Principles regarding Data Usage. Existing evaluation methods regarding the FAIR Guiding Principles (FAIRmetrics) were not applicable to our analysis of software tools. CONCLUSION: Using the FAIR Guiding Principles, we FAIRificated relevant parts of our research data management pipeline improving findability, accessibility, interoperability and reuse of datasets and research results. We aim to implement the FAIRmetrics to our data management infrastructure and-where required-to contribute to the FAIRmetrics for research data in the biomedical informatics domain as well as for software tools to achieve a higher degree of FAIRness of our research data management pipeline.