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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 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.
NACDA acquires and preserves data relevant to gerontological research, processing as needed to promote effective research use, disseminates them to researchers, and facilitates their use. By preserving and making available the largest library of electronic data on aging in the United States, NACDA offers opportunities for secondary analysis on major issues of scientific and policy relevance
The ABCD Data Repository houses all data generated by the Adolescent Brain Cognitive Development (ABCD) Study. The ABCD Study is supported by NIH partners (the National Institute on Drug Abuse, the National Institute on Alcohol Abuse and Alcoholism, the National Cancer Institute, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute of Mental Health, the National Institute on Minority Health and Health Disparities, the National Institute of Neurological Disorders and Stroke, the NIH Office of Behavioral and Social Sciences Research, and the NIH Office of Research on Women’s Health), as well as the Centers for Disease Control and Prevention – Division of Adolescent and School Health. This repository will store data generated by ABCD investigators, serve as a collaborative platform for harmonizing these data, and share those data with qualified researchers.
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CaPSURE™ is a longitudinal, observational study of approximately 15,000 men with all stages of biopsy-proven prostate cancer. Patients have enrolled at 43 community urology practices, academic medical centers, and VA hospitals throughout the United States since 1995. CEASAR stands for Comparative Effectiveness Analysis of Surgery and Radiation. The ongoing goal of CEASAR is to help learn more about what prostate cancer treatments work best, for which patients, in whose hands. There are currently about 3,600 men with a prostate cancer diagnosis participating in CEASAR. Three rounds of surveys have been completed, with the first carried out in the spring of 2010. We are currently in the process of conducting our fourth survey with the same group of men in our study. This survey, our Three Year Follow-up, will occur throughout the summer of 2014.
The Social Science Data Archive is still active and maintained as part of the UCLA Library Data Science Center. SSDA Dataverse is one of the archiving opportunities of SSDA, the others are: Data can be archived by SSDA itself or by ICPSR or by UCLA Library or by California Digital Library. The Social Science Data Archives serves the UCLA campus as an archive of faculty and graduate student survey research. We provide long term storage of data files and documentation. We ensure that the data are useable in the future by migrating files to new operating systems. We follow government standards and archival best practices. The mission of the Social Science Data Archive has been and continues to be to provide a foundation for social science research with faculty support throughout an entire research project involving original data collection or the reuse of publicly available studies. Data Archive staff and researchers work as partners throughout all stages of the research process, beginning when a hypothesis or area of study is being developed, during grant and funding activities, while data collection and/or analysis is ongoing, and finally in long term preservation of research results. Our role is to provide a collaborative environment where the focus is on understanding the nature and scope of research approach and management of research output throughout the entire life cycle of the project. Instructional support, especially support that links research with instruction is also a mainstay of operations.
The Population Research in Sexual Minority Health (PRISM) Data Archive is a collaborative project of the Center for Population Research in LGBT Health and the Inter-university Consortium for Political and Social Research (ICPSR). The PRISM data archive project is a primary initiative of the Center. PRISM makes high quality datasets useful for analysis of issues affecting sexual and gender minority populations in the United States available researchers, scholars, educators and practitioners.
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.