The Rheumatology Informatics System for Effectiveness (RISE) registry is a Qualified Clinical Data Registry (QCDR) developed by the American College of Rheumatology to help clinicians and researchers. RISE is the first and largest electronic health record (EHR)-enabled rheumatology registry collecting 2.6 Million records in the United States since 2014. It is a rheumatology-specific registry and includes patients with all medical conditions seen by a rheumatologist and all insurance types.
The new Medical Data Vision (EBM Provider®) Health Insurance Association Database contains inpatient and outpatient information from different institutions. Data are available since April 2012 containing >6 million patient data from more than 120 health insurance associations. The database has diagnosis, procedure, drug and cost data.
The Australian Breast Cancer Tissue Bank (ABCTB) is an open access, not-for-profit biobank established in 2005 containing 7,134 donors, and 156,080 available samples as of June 2021. The ABCTB holds samples of cancerous and normal breast tissue and blood collected during routine pathology from women (and men) with breast cancer, as well as additional information about the health and breast cancer treatment of donors.
The National Longitudinal Study of Adolescent to Adult Health (Add Health) is a longitudinal study of a nationally representative sample of >20,000 adolescents, originally in grades 7-12 during 1994-95, and then followed for 5 waves to date, last in 2016-18.
Managed by the Netherlands Comprehensive Cancer Organisation (IKNL), the Netherlands Cancer Registry is the only oncological hospital registry in the Netherlands with data on all cancer patients. Data are available on national level from 1989 onwards. The Netherlands has about 17,000,000 inhabitants. Annually, there are 116,500 new diagnoses of cancer and 44,000 cancer deaths in the Netherlands.
Containing over 80M patients, the Hospital Episode Statistics (HES) Database (United Kingdom) consists of all secondary care activity in England starting April 2009. Data are collected by all NHS Trusts in England and reported on a monthly basis. Patient characteristics are also included in the database, such as age, gender and ethnicity.
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With data starting from 1999 and around 500,000 cancer patients being added each year, the population-based cancer registries in each German federal state transfer data to the German Centre for Cancer Registry Data (ZfKD). ZfKD estimates national cancer incidence, prevalence and survival rates after assessing the completeness of the data recorded in the individual registries. The basic method is that the data are first checked for completeness of incidence and of vital status.
The Egypt National Population-based Cancer Registry (NPCR) was established in 2007 and is the only source for cancer incidence in the whole of Egypt. It routinely collects patient data from peripheral population-based registries in the cancer centers of the 5 governorates. Data include patient demographics, primary tumor site, tumor morphology, stage at diagnosis, and follow-up for vital status from over one million patients.