In the Virtual Observatory (VO), the Registry provides the mechanism with which users and applications discover and select resources – typically, data and services – that are relevant for a particular scientific problem. Even though the VO adopted technologies in particular from the bibliographic community where available, building the Registry system involved a major standardisation effort, in...

background: the aim of the present study was to develop a scoring system for predicting 1-year major adverse cardiac events (mace), including mortality, target vessel or target lesion revascularization, coronary artery bypass graft surgery, and non-fatal myocardial infarction after percutaneous coronary intervention (pci). methods: the data were extracted from a single center pci registry. the ...

The UK Renal Registry receives encrypted data extracts quarterly from each centre providing Renal Replacement Therapy (RRT) in England, Wales and Northern Ireland. Summary data is received from the Scottish Renal Registry to allow national statistics to be compiled. Data from patients receiving haemodialysis in satellite units or at home are reported through the main renal centre. Data from pat...

OBJECTIVE To present the usefulness of a centralized system of data collection for the development of an international multicentre registry of SpA. METHOD The originality of this registry consists in the creation of a virtual network of researchers in a computerized Internet database. From its conception, the registry was meant to be a dynamic acquiring system. RESULTS REGISPONSER has two d...

Objective To provide an update on the status of provider participation in the US Wound Registry (USWR) and its specialty registry the Hyperbaric Oxygen Therapy Registry (HBOTR), which provide much-needed national benchmarking and quality measurement services for hyperbaric medicine. Methods Providers can meet many requirements of the Merit-Based Incentive Payment System (MIPS) and simultaneou...

OBJECTIVE To strengthen the current Injury Surveillance System (IS System) in order to better monitor injury conditions, improve protection ways and promote safety. METHODS At first we carried out a study to evaluate the frameworks of IS System in the developed countries. Then all the available documents from World Health Organization, Eastern Mediterranean Regional Organization, as well as M...

epidemiological studies have shown wide geographical and racial variation in the prevalence and patterns of immunodeficiency disorders. to determine the frequency of primary immunodeficiencies (pid) in iran, the iranian primary immunodeficiencies registry (ipidr) was organized in 1999. the diagnosis of immunodeficiency in our patients was based on standard criteria. the patient’s data were extr...

Patient registries are poorly interoperable and as a result data exchange or aggregation across organizations, regions and countries for secondary purposes (i.e. research and public health) is difficult to perform. PARENT Joint Action aims to provide EU Member States with a set of guidelines, recommendations and tools to support setting-up, management and governance of interoperable patient reg...

Aim To describe data collection pathways and practical challenges experienced by an academic comprehensive cancer centre aiming to record clinical data for patients being treated with a novel radiotherapy treatment modality. Methods Various options to capture data from all patients treated with the CyberKnife Robotic Radiosurgery System at Sir Charles Gairdner Hospital (SCGH) in Western Austral...