EMI REGISTRY MANUAL

EMI REGISTRY MANUA

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

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

Contextualized B2B Registries

Abstract. Service discovery is a fundamental concept underpinning the move towards dynamic service-oriented business partnerships. The business process for integrating service discovery and underlying registry technologies into business relationships, procurement and project management functions has not been examined and hence existing Web Service registries lack capabilities required by business today. In this paper we present a novel contextualized B2B registry that supports dynamic registration and discovery of resources within management contexts to ensure that the search space is constrained to the scope of authorized and legitimate resources only. We describe how the registry has been deployed in three case studies from important economic sectors (aerospace, automotive, pharmaceutical) showing how contextualized discovery can support distributed product development processes

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