Information is shared within organizations and between organizations at an ever increasing rate. One system design that enables sharing in a distributed environment is a Virtual Observatory. AVirtual Observatory is built with clearly specified and standardized components. One essential component is a data model for the exchange of metadata. Well designed data models are compatible with the tene...

Notification data, for selected STIs, extracted from the Nationally Notifiable Diseases Surveillance System (NNDSS) as at 17 September 2015 were used for the analyses. HIV notification data, collected through the National HIV Registry, were sourced from the 2015 annual surveillance reports from the Kirby Institute.4 NatioNal Notifiable Diseases surveillaNce system surveillaNce report: sexually ...

Standardized management of data elements (DEs) for Case Report Form (CRF) is crucial in Clinical Trials Information System (CTIS). Traditional CTISs utilize organization-specific definitions and storage methods for Des and CRFs. We developed metadata-based DE management system for clinical trials, Clinical and Histopathological Metadata Registry (CHMR), using international standard for metadata...

Environmental Polymorphisms Registry (EPR) is a large-scale phenotype-by-genotype registry developed by National Institute of Environmental Health Sciences to facilitate translational research. The link between personal identity and collected genomic data was preserved in EPR which creates opportunities for EPR to be linked to phenotype-rich databases, such as the Carolina Data Warehouse for He...

To store patients’ medical histories and to exchange them between physicians, patient registries are used. Registries contain detailed data on patients and their treatments, and may comprise additional documents. This makes them very valuable for epidemiological research due to the amount of information contained. Providing data for research requires anonymization and pseudonymization to addres...

BACKGROUND The National Cardiovascular Data Registry CathPCI Registry was recently linked with longitudinal Centers for Medicare & Medicaid (CMS) claims data. The degree to which this linked cohort is representative of the overall CathPCI Registry and CMS PCI populations is unknown. METHODS AND RESULTS CathPCI Registry records were linked to CMS inpatient claims using indirect identifiers. We...

OBJECTIVE The regulation of surgical implants is vital to patient safety, and there is an international drive to establish registries for all implants. Hearing loss is an area of unmet need, and industry is targeting this field with a growing range of surgically implanted hearing devices. Currently, there is no comprehensive UK registry capturing data on these devices; in its absence, it is dif...