(REPOSITORY CORE) Leveraging the existing institutional, NIH-funded resources and our vast expertise in centralized, large-scale state-of-the-art data management for clinical research, the DISCOVERY Repository Core will deliver the infrastructure and maximize utilization and sharing of the de-identified clinical, imaging, and biospecimen data both between network sites and, through an open-access data-sharing process in accordance to resource/data sharing plans and in full compliance with clinical research-related regulations, with the wider scientific community. The DISCOVERY Repository Core personnel have in-depth expertise in managing and sharing the types of large, multi-center, multi-modal data that will be produced by this project. Among other projects, the DISCOVERY Repository Core leadership has oversight, technical and development roles in the MarkVCID Consortium and will leverage that infrastructure and capabilities as a basis for the DISCOVERY Repository. The DISCOVERY Repository system will provide a web portal that serves as the main entry point into the project?s resources. The portal will comprise a set of capabilities to provide project information, data management, data integrity and quality, access requests, querying, and download. The Repository will fully integrate the imaging, clinical assessment instrument, and biospecimen metadata into its query capability. The DISCOVERY Repository will leverage the MarkVCID infrastructure and the infrastructure and experience of the Biospecimens repository developed through the Alzheimer?s Clinical Trial Consortium (ACTC) U19 to build the necessary capabilities to handle the anticipated increase in data flow that will require different back-end processes and handle the new data types in the DISCOVERY set of biomarkers. The Repository Core will: 1) To create an integrated data management infrastructure that follows the best practices for data management established by MarkVCID consortium and NIH guidance documents; 2) develop a repository infrastructure that will allow data to be ?findable? and ?accessible?; 3) create a metadata infrastructure that will allow data to be ?interoperable? and ?reusable?. The DISCOVERY repository will leverage work by other NIH repositories and ontology-development groups to create metadata that maximizes interoperability, using well-established terms and common data elements wherever possible, so that data consumers are able to understand and successfully reuse data generated by others. Successful sharing and reuse are also predicated on the assurance of data quality and integrity. We will deploy an extensive suite of tools to ensure that data stored in the Repository is consistent and of the highest quality. The DISCOVERY Repository will follow the FAIR principles and we expect that adherence to those principles will maximize utilization of this unique data set and develop an ?open-access? platform as an enduring resource for the future scientific breakthroughs in stroke and VCID.

National Institute of Health (NIH)
National Institute of Neurological Disorders and Stroke (NINDS)
Research Program--Cooperative Agreements (U19)
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Special Emphasis Panel (ZNS1)
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Massachusetts General Hospital
United States
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