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Human biomaterial banks (short: biobanks) are collections of human body substances (i.e. blood, DNA, urine or tissue) connected with disease specific information. This allow for research of relations between deseases and underlying (molecular) modifications and paves the way for developing target-oriented therapies ("personalized medicine"). The biobank material arises from samples taken for therapeutical or diagnostic reasons or is extracted in the context of clinical trials. An approval for usage by the patient is always needed prior to any research activities.
The nationally recognized National Cancer Database (NCDB)—jointly sponsored by the American College of Surgeons and the American Cancer Society—is a clinical oncology database sourced from hospital registry data that are collected in more than 1,500 Commission on Cancer (CoC)-accredited facilities. NCDB data are used to analyze and track patients with malignant neoplastic diseases, their treatments, and outcomes. Data represent more than 70 percent of newly diagnosed cancer cases nationwide and more than 34 million historical records.
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 PAIN Repository is a recently funded NIH initiative, which has two components: an archive for already collected imaging data (Archived Repository), and a repository for structural and functional brain images and metadata acquired prospectively using standardized acquisition parameters (Standardized Repository) in healthy control subjects and patients with different types of chronic pain. The PAIN Repository provides the infrastructure for storage of standardized resting state functional, diffusion tensor imaging and structural brain imaging data and associated biological, physiological and behavioral metadata from multiple scanning sites, and provides tools to facilitate analysis of the resulting comprehensive data sets.
The Humanitarian Data Exchange (HDX) is an open platform for sharing data across crises and organisations. Launched in July 2014, the goal of HDX is to make humanitarian data easy to find and use for analysis. HDX is managed by OCHA's Centre for Humanitarian Data, which is located in The Hague. OCHA is part of the United Nations Secretariat and is responsible for bringing together humanitarian actors to ensure a coherent response to emergencies. The HDX team includes OCHA staff and a number of consultants who are based in North America, Europe and Africa.
The Avian Knowledge Network (AKN) is an international network of governmental and non-governmental institutions and individuals linking avian conservation, monitoring and science through efficient data management and coordinated development of useful solutions using best-science practices based on the data.
SimTK is a free project-hosting platform for the biomedical computation community that enables researchers to easily share their software, data, and models and provides the infrastructure so they can support and grow a community around their projects. It has over 126.656 members, hosts 1.648 projects from researchers around the world, and has had more than 2.095.783 files downloaded from it. Individuals have created SimTK projects to meet publisher and funding agencies’ software and data sharing requirements, run scientific challenges, create a collection of their community’s resources, and much more.
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The sources of the data sets include data sets donated by researchers, surveys carried out by SRDA, as well as by government department and other academic organizations. Prior to the release of data sets, the confidentiality and sensitivity of every survey data set are evaluated. Standard data management and cleaning procedures are applied to ensure data accuracy and completeness. In addition, metadata and relevant supplement files are also edited and attached.