Data Access through PIC-SURE

NHLBI BioDataCatalyst

NHLBI BioData Catalyst is a cloud-based platform providing tools, applications, and workflows in secure workspaces. By increasing access to NHLBI datasets and innovative data analysis capabilities, BioData Catalyst accelerates efficient biomedical research that drives discovery and scientific advancement, leading to novel diagnostic tools, therapeutics, and prevention strategies for heart, lung, blood, and sleep disorders.

Though the primary goal of the BioData Catalyst project is to build a data science ecosystem, at its core, this is a people-centric endeavor. BioData Catalyst is also building a community of practice working collaboratively to solve technical and scientific challenges.

https://biodatacatalyst.nhlbi.nih.gov/

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This is a web-based resource that aggregates, secures, and stores deidentified patient information from 12 different registries for rare diseases (5,277 patients with 178 different rare dieseases) all in one place. This platform allows for the wider dissemination of data collected by individual rare disease registries as well as the increased accessibility of data for researchers conducting intra-registry and cross-registry queries in the genesis of hypotheses for potential study. It uses the BD2K PIC-SURE RESTful API international ontologies for semantic interoperability, mappings to UMLS Concept Unique Identifiers, and mappings to 55 different GRDR Common Data Elements.

User Interface: https://grdr.hms.harvard.edu

User Guides:

https://s3.amazonaws.com/hms-dbmi-docs/GRDR_Quick_guide.pdf

https://s3.amazonaws.com/hms-dbmi-docs/GRDR_User_Guide.pdf

10 Minute Demo Video: https://vimeo.com/151171529

Avillach Lab

NIH/NCATS Global Rare Diseases Patient Registry Data Repository (GRDR®)