Health and healthcare data can be obtained from disease or event registries. The Surveillance, Epidemiology and End Results (SEER) and the United States Renal Data System (USRDS) are examples of disease-specific databases.
The National Heart, Lung and Blood Institute (NHLBI) Biologic Specimen and Data Repository is the coming together of two entities: the NHLBI Biologic Specimen Repository (NHLBI Biorepository), managed by the NHLBI, Division of Blood Diseases and Resources (DBDR), Transfusion Medicine and Cellular Therapeutics Branch, and the NHLBI Data Repository, managed by the NHLBI, Division of Prevention and Population Sciences (DPPS), Epidemiology Branch. These two programs have always had a similar mission, namely to enhance and facilitate further research in cardiovascular, pulmonary and hematologic conditions by providing access to qualified investigators to stored biospecimen and data collections.
SEER collects information on cancer incidence, prevalence and survival from specific geographic areas representing 28 percent of the US population. The SEER program compiles reports on all of these, plus cancer mortality, for the entire country.
The SEER-Medicare data come from the Surveillance, Epidemiology, and End Results (SEER) program of cancer registries that collect clinical, demographic, and cause of death information for persons with cancer and the Medicare claims for covered health care services from the time of a person’s Medicare eligibility until death. There are two cohorts of people in the Seer-Medicare data — persons with cancer and, if needed for your research study, you may request a random sample of Medicare beneficiaries who do not have cancer, drawn from Medicare beneficiaries residing in the SEER areas.
The data obtained from the NCI thus far consists of the SEER Patient Entitlement and Diagnosis Summary File (PEDSF) for all persons newly diagnosed with breast cancer from 1995-2002 in 12 of the SEER registries who had matching Medicare claims file records.
Description of data elements
United States Renal Data System (USRDS) is a national data system that collects, analyzes, and distributes information about end-stage renal disease (ESRD) in the United States.