BACKGROUND The aim was to review the funding, organization, data handling, outcome measurements, and findings from existing national shoulder and elbow joint replacement registries; to consider the possibility of pooling data between registries; and to consider wether a pan european registry might be feasible. MATERIALS AND METHODS Web sites, annual reports, and publications from ongoing nati...

Metadata Registries (MDR) are information systems defined to manage and publish metadata related to information and data models. An inherent part of the data models registered within an MDR is the vocabularies used to assign values to data elements. These vocabularies relate to concepts that can be managed by Knowledge Organization Systems (KOS). This paper discusses how an MDR can import and t...

Follow-up procedures vary among cancer registries in North America. US registries are funded by the Surveillance, Epidemiology, and End Results (SEER) Program and/or the National Program of Cancer Registries (NPCR). SEER registries ascertain vital status and date of last contact to meet follow-up standards. NPCR and Canadian registries primarily conduct linkages with local and national death re...

The variability in deceased organ donation registries worldwide has received little attention. We considered all operating registries, where individual wishes about organ donation were recorded in a computerized database. We included registries which recorded an individual's decision to be a donor (donor registry), and registries which only recorded an individual's objection (non-donor registry...

PURPOSE Patient registries are used to monitor safety, examine real-world effectiveness, and may potentially contribute to comparative effectiveness research. To our knowledge, life sciences industry (LSI)-sponsored registries have not been systematically categorized. This study represents a first step toward understanding such registries over time. METHODS Studies described as registries wer...