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

Rhode Island Report on the Judiciary 1985

This is the eleventh annual report produced by the Administrative Office of State Courts, and it shows that the courts have continued to make improvements in several areas. Accomplishments for 1985 include the continued effort to meet speedy trial guidelines, major improvements to court buildings, and the work of study committees to resolve particular problems affecting the judicial system

Proposal for an IMLS Collection Registry and Metadata Repository

The University of Illinois at Urbana-Champaign proposes to design, implement, and research a collection-level registry and item-level metadata repository service that will aggregate information about digital collections and items of digital content created using funds from Institute of Museum and Library Services (IMLS) National Leadership Grants. This work will be a collaboration by the University Library and the Graduate School of Library and Information Science. All extant digital collections initiated or augmented under IMLS aegis from 1998 through September 30, 2005 will be included in the proposed collection registry. Item-level metadata will be harvested from collections making such content available using the Open Archives Initiative Protocol for Metadata Harvesting (OAI PMH). As part of this work, project personnel, in cooperation with IMLS staff and grantees, will define and document appropriate metadata schemas, help create and maintain collection-level metadata records, assist in implementing OAI compliant metadata provider services for dissemination of item-level metadata records, and research potential benefits and issues associated with these activities. The immediate outcomes of this work will be the practical demonstration of technologies that have the potential to enhance the visibility of IMLS funded online exhibits and digital library collections and improve discoverability of items contained in these resources. Experience gained and research conducted during this project will make clearer both the costs and the potential benefits associated with such services. Metadata provider and harvesting service implementations will be appropriately instrumented (e.g., customized anonymous transaction logs, online questionnaires for targeted user groups, performance monitors). At the conclusion of this project we will submit a final report that discusses tasks performed and lessons learned, presents business plans for sustaining registry and repository services, enumerates and summarizes potential benefits of these services, and makes recommendations regarding future implementations of these and related intermediary and end user interoperability services by IMLS projects.unpublishednot peer reviewe

Comments to the Federal Trade Commission on the CAN-SPAM Rule Review, 16 C.F.R. Part 316, Project No. R711010

These comments respond to the Federal Trade Commission’s request for public comment on the CAN-SPAM Rule, 16 C.F.R. Part 316. The CAN-SPAM Act set a minimum baseline for consumer protections that senders of unsolicited commercial email must respect. These protections have been largely effective at giving consumers the ability to manage how a large group of companies uses their email addresses for marketing. At the same time, the Act has had little effect on the volume of unsolicited commercial email or on the amount of email sent by scammers and fraudsters. The Act and its implementing Rule, then, have been neither the success they should be nor the failure that critics describe. These comments explain how the Commission should adjust the Rule to maintain its substantial consumer benefits while addressing its shortcomings. By leaving in place the significant consumer protections the Rule provides while updating and tweaking their substance to provide additional protections and account for technological change since the Rule was promulgated, the Commission would best implement the goals and structure of the Act. Moreover, the Commission should look for additional ways, within its authority under the Act and other statutes, to address the problem of scam emails

Focal Spot, Spring 2008

https://digitalcommons.wustl.edu/focal_spot_archives/1108/thumbnail.jp

Barnes Hospital Bulletin

https://digitalcommons.wustl.edu/bjc_barnes_bulletin/1124/thumbnail.jp

Barnes Hospital Bulletin

https://digitalcommons.wustl.edu/bjc_barnes_bulletin/1120/thumbnail.jp

Academic Recognition of Military Experience in STEM Education

Recent calls for increases in science, technology, engineering, and math (STEM) education attainment and veterans' education success have created a platform for examining how veterans with military experience in STEM fields can more efficiently complete postsecondary education and training.The American Council on Education (ACE) military evaluation program provides credit recommendations for military courses that align servicemembers' training with postsecondary curricula and competencies. These recommendations,if accepted as transfer credit, can decrease the time it takes servicemembers and veterans to complete STEM certificates and degrees.Numerous challenges exist in considering military credit recommendations for postsecondary courses and degrees. The process is complex, requiring an acute understanding of military transcripts and the resources and tools available to assist institutions of higher education in awarding credit for military training. Additionally, misinformation and lack of awareness regarding the content, scope, and rigor of the ACE review process and resulting credit recommendations create resistance to awarding credit.Successfully increasing acceptance of military credit recommendations at institutions of higher education can be achievedthrough public-private partnerships between colleges and universities, federal agencies, workforce development experts, and other key stakeholders using available resources and tools to build degree pathways that accurately map military training to STEM courses.An education campaign about the ACE review process and the value of the resulting credit recommendations will also help eliminate the stigma surrounding credit awarded for prior learning, and boost support among leaders and institutions for increased acceptance of military credit recommendations. This approach will lead to the developmentof best practices and, ultimately, increases in both STEM attainment and veterans' education success