Show me the data: the pilot UK Research Data Registry

The UK Research Data (Metadata) Registry pilot project is implementing a prototype registry for the UK's research data assets, enabling the holdings of subject-based data centres and institutional data repositories alike to be searched from a single location. The purpose of the prototype is to prove the concept of the registry and uncover challenges that will need to be addressed if and when the registry is developed into a sustainable service. The prototype is being tested using metadata records harvested from nine UK data centres and the data repositories of nine UK universities

Early stages of building a rare disease registry, methods and 2010 data from the Belgian Neuromuscular Disease Registry (BNMDR)

The Belgian Neuromuscular Disease Registry, commissioned in 2008, aims to collect data to improve knowledge on neuromuscular diseases and enhance quality health services for neuromuscular disease patients. This paper presents a clear outline of the strategy to launch a global national registry. All patients diagnosed with one of the predefined 62 neuromuscular disease groups and living in Belgium may be included in the yearly updated Registry. Basic core data is harvested through a newly designed web application by the six accredited neuromuscular reference centres. In 2010, 3,424 patients with a neuromuscular disorder were registered. The most prevalent disease group in the Registry is Hereditary Motor and Sensory Neuropathy, as similarly stated by other studies, albeit the prevalence in Belgium is five times lower: 6.5 per 100,000 in the north of Belgium, versus 17.0-41.0 per 100,000 in other areas of Europe. Very few patients were captured in the south of the country. With the aim to collect valuable epidemiological data, the registry targets to gather high quality data, that the sample to be representative of the population and that it be complete. The past 5 years of building the registry have improved its quality, albeit the consistent gap in data from the south of the country prevails, influencing the estimated prevalence of these diseases. To this day, the true burden of neuromuscular diseases in Belgium is not known but actions have been undertaken to address these issues

Systems And Methods For Web Service Architectures

Web service registry systems and methods, and web service architectures are disclosed. A web service registry system can include a web service registry, a plurality of web services, a plurality of knowledgebase models, and a control system. The plurality of web services can be published to the web service registry for effective dynamic discovery and invocation of the web services. The plurality of knowledgebase models, which can be defined by domain knowledge experts, can be associated with the web service registry. Each of the knowledgebase models can include a semantic specification and a syntactic specification. The control system can periodically filter non-compliant web services from the web service registry, where a non-compliant web service fails to comply with a predetermined knowledgebase model associated with the web service registry. Other embodiments of the web service management systems, architectures, and methods are also disclosed.Georgia Tech Research Corporatio

Interlayer Registry Determines the Sliding Potential of Layered Metal Dichalcogenides: The case of 2H-MoS2

We provide a simple and intuitive explanation for the interlayer sliding energy landscape of metal dichalcogenides. Based on the recently introduced registry index (RI) concept, we define a purely geometrical parameter which quantifies the degree of interlayer commensurability in the layered phase of molybdenum disulphide (2HMoS2). A direct relation between the sliding energy landscape and the corresponding interlayer registry surface of 2H-MoS2 is discovered thus marking the registry index as a computationally efficient means for studying the tribology of complex nanoscale material interfaces in the wearless friction regime.Comment: 13 pages, 7 figure

EMI REGISTRY MANUAL

EMI REGISTRY MANUA

The TOSCA Registry for Tuberous Sclerosis-Lessons Learnt for Future Registry Development in Rare and Complex Diseases.

Introduction: The TuberOus SClerosis registry to increase disease Awareness (TOSCA) is an international disease registry designed to provide insights into the clinical characteristics of patients with Tuberous Sclerosis Complex (TSC). The aims of this study were to identify issues that arose during the design, execution, and publication phases of TOSCA, and to reflect on lessons learnt that may guide future registries in rare and complex diseases. Methods: A questionnaire was designed to identify the strengths, weaknesses, and issues that arose at any stage of development and implementation of the TOSCA registry. The questionnaire contained 225 questions distributed in 7 sections (identification of issues during registry planning, during the operation of the registry, during data analysis, during the publication of the results, other issues, assessment of lessons learnt, and additional comments), and was sent by e-mail to 511 people involved in the registry, including 28 members of the Scientific Advisory Board (SAB), 162 principal investigators (PIs), and 321 employees of the sponsor belonging to the medical department or that were clinical research associate (CRA). Questionnaires received within the 2 months from the initial mailing were included in the analysis. Results: A total of 53 (10.4%) questionnaires were received (64.3% for SAB members, 12.3% for PIs and 4.7% for employees of the sponsor), and the overall completeness rate for closed questions was 87.6%. The most common issues identified were the limited duration of the registry (38%) and issues related to handling of missing data (32%). In addition, 25% of the respondents commented that biases might have compromised the validity of the results. More than 80% of the respondents reported that the registry improved the knowledge on the natural history and manifestations of TSC, increased disease awareness and helped to identify relevant information for clinical research in TSC. Conclusions: This analysis shows the importance of registries as a powerful tool to increase disease awareness, to produce real-world evidence, and to generate questions for future research. However, there is a need to implement strategies to ensure patient retention and long-term sustainability of patient registries, to improve data quality, and to reduce biases

Simple circuit positions film frames in projector

Individual frames on a photographic film strip in a projector are automatically positioned by a simple circuit. The circuit uses a photodiode that senses frame registry position and a relay that stops the film-advance motor to suspend the film at point of registry

Alaska Sex Offense Law: What Has Changed

Alaska’s sex offense laws fall into three broad categories: crimes and defenses, sentencing, and post-release supervision and registry. This article discusses each in turn, looking at how these laws have changed following the 31st legislative session.The Schneider Fix / Crimes and defenses / Sentencing / Supervision and registry / Conclusion / [Sidebar:] HB 49’s additional changes / Reference