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The data in the U of M’s Clinical Data Repository comes from the electronic health records (EHRs) of more than 2 million patients seen at 8 hospitals and more than 40 clinics. For each patient, data is available regarding the patient's demographics (age, gender, language, etc.), medical history, problem list, allergies, immunizations, outpatient vitals, diagnoses, procedures, medications, lab tests, visit locations, providers, provider specialties, and more.
The N3C Data Enclave is a secure portal containing a very large and extensive set of harmonized COVID-19 clinical electronic health record (EHR) data. The data can be accessed through a secure cloud Enclave hosted by NCATS and cannot be downloaded due to regulatory control. Broad access is available to investigators at institutions that sign a Data Use Agreements and via Data Use Requests by investigators. The N3C is a unique open, reproducible, transparent, collaborative team science initiative to leverage sensitive clinical data to expedite COVID-19 discoveries and improve health outcomes.
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The Penn Integrated Neurodegenerative Disease Database (INDD) contains data from individuals with Alzheimer's disease, Parkinson's disease, frontotemporal dementia, and amyotrophic lateral sclerosis, who have been followed in research studies at the University of Pennsylvania. The database has been periodically described in publications (https://pubmed.ncbi.nlm.nih.gov/23978324/), with updates on the website. Researchers can request biosamples as well as clinical and biomarker data. Scientists work collaboratively to analyze the Integrative Neurodegenerative Disease Database (INDD) from the Center for Neurodegenerative Disease Research (CNDR) that tracks ~11,000 patients who attended one of four neurodegenerative disease centers at Penn.
Country
CINES is the French national long-term preservation service provider for Higher Education and Research: more than 20 institutions (universities, librairies, labs) archive their digital heritage at CINES so that it's preserved over time in a secure, dedicated environment. This includes documents such as PhD theses or publications, digitized ancient/rare books, satellite imagery, 3D/vidéos/image galleries, datasets, etc.
Country
The Research Data Centre (FDZ) of the German Federal Employment Agency (BA) at the Institute for Employment Research (IAB) is intended mainly to facilitate access to BA and IAB micro data for non-commercial empirical research using standardised and transparent access rules. The FDZ mediates between data producers and external users. We also control for compliance with data protection regulations.
Country
The Population Health Research Data Repository housed at MCHP is a comprehensive collection of administrative, registry, survey, and other data primarily relating to residents of Manitoba. It was developed to describe and explain patterns of health care and profiles of health and illness, facilitating inter-sectoral research in areas such as health care, education, and social services.
Country
Coscine is a web-based RDM platform for all kind of generic research data that was developed at RWTH Aachen University. It enables the storage, management and archiving for ten years of research and metadata generated in the context of research projects. The platform also promotes cooperation across organizational boundaries, as researchers can log in either via their organization via SSO or via ORCID. To enable meaningful metadata management for all research areas, Coscine allows flexible description with metadata based on established technologies (SHACL/RDF). The platform is designed to make warm/used/active data FAIR.