The lack of interoperability between repositories of heterogeneous and geographically widespread data is an obstacle to the diffusion, sharing and reutilization of those data. We present the development of an open repositories network taking into account both the syntactic and semantic interoperability of the different repositories and based on international standards in this field. The network is used by the medical community in France for the diffusion and sharing of digital teaching resources. The syntactic interoperability of the repositories is managed using the OAI-PMH protocol for the exchange of metadata describing the resources. Semantic interoperability is based, on one hand, on the LOM standard for the description of resources and on MESH for the indexing of the latter and, on the other hand, on semantic interoperability management designed to optimize compliance with standards and the quality of the metadata.
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Patient
January 2025
Pfizer, New York City, NY, USA.
Using patient preference information (PPI) to incorporate patient voices into the drug development lifecycle can help align therapies with the needs and values of patients. However, several barriers have limited the use of PPI, including a lack of clarity on its use by decision-makers, a need for greater decision-maker trust in PPI, and a lack of time, budgets, and access to specialist expertise. The value proposition for PPI could be enhanced by making it FAIR: Findable, Accessible, Interoperable, and Reusable.
View Article and Find Full Text PDFJ Neurotrauma
January 2025
Division of Neuroscience, National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, Maryland, USA.
Effective team science requires procedural harmonization for rigor and reproducibility. Multicenter studies across experimental modalities (domains) can help accelerate translation. The Translational Outcomes Project in NeuroTrauma (TOP-NT) is a pre-clinical traumatic brain injury (TBI) consortium charged with establishing and validating noninvasive TBI assessment tools through team science.
View Article and Find Full Text PDFIntroduction: Publishing medical metadata stored in case report forms (CRFs) is a prerequisite for the development of a learning health system (LHS) by fostering reuse of metadata and standardization in health research. The aim of our study was to investigate medical researchers' (MRs) willingness to share CRFs, to identify reasons for and against CRF sharing, and to determine if and under which conditions MRs might consider sharing CRF metadata via a public registry.
Methods: We examined CRF data sharing commitments for 1842 interventional trials registered on the German Clinical Trials Registry (DRKS) from January 1, 2020, to December 31, 2021.
Genetics
January 2025
EMBL-EBI - Non-Vertebrate Genomics Team, European Molecular Biology Laboratory, European Bioinformatics Institute, Wellcome Trust Genome Campus, Cambridge CB10 1SD, UK.
The rapid increase in the number of reference-quality genome assemblies presents significant new opportunities for genomic research. However, the absence of standardized naming conventions for genome assemblies and annotations across datasets creates substantial challenges. Inconsistent naming hinders the identification of correct assemblies, complicates the integration of bioinformatics pipelines, and makes it difficult to link assemblies across multiple resources.
View Article and Find Full Text PDFGigascience
January 2025
INRAE, Université de Bordeaux, F-33610 Cestas, France.
Background: Descriptive metadata are vital for reporting, discovering, leveraging, and mobilizing research datasets. However, resolving metadata issues as part of a data management plan can be complex for data producers. To organize and document data, various descriptive metadata must be created.
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