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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.
Junar provides a cloud-based open data platform that enables innovative organizations worldwide to quickly, easily and affordably make their data accessible to all. In just a few weeks, your initial datasets can be published, providing greater transparency, encouraging collaboration and citizen engagement, and freeing up precious staff resources.
INDI was formed as a next generation FCP effort. INDI aims to provide a model for the broader imaging community while simultaneously creating a public dataset capable of dwarfing those that most groups could obtain individually.
The Cancer Cell Line Encyclopedia project is a collaboration between the Broad Institute, and the Novartis Institutes for Biomedical Research and its Genomics Institute of the Novartis Research Foundation to conduct a detailed genetic and pharmacologic characterization of a large panel of human cancer models, to develop integrated computational analyses that link distinct pharmacologic vulnerabilities to genomic patterns and to translate cell line integrative genomics into cancer patient stratification. The CCLE provides public access to genomic data, analysis and visualization for about 1000 cell lines.
LONI’s Image and Data Archive (IDA) is a secure data archiving system. The IDA uses a robust infrastructure to provide researchers with a flexible and simple interface for de-identifying, searching, retrieving, converting, and disseminating their biomedical data. With thousands of investigators across the globe and more than 21 million data downloads to data, the IDA guarantees reliability with a fault-tolerant network comprising multiple switches, routers, and Internet connections to prevent system failure.
The Gateway to Global Aging Data is a platform for population survey data on aging around the world. This site offers a digital library of survey questions, a search engine for finding comparable questions across surveys, and identically defined variables for cross-country analysis. The Survey Meta Data Repository provides Health and Retirement Study metadata of family surveys. Survey Meta Data Repository primarily provides access to survey metadata so researchers can compare survey formats, types and identically defined variables. Additional resources include tools for cross-country analysis, general statistics by country and year, survey question library, and tools for comparing questions across the surveys. Datasets are in Stata format; users must register and request datasets.