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NLM Request for Information Solicits Feedback on the Future of ClinicalTrials.gov

Posted by on January 8th, 2020 Posted in: Announcements, Consumer Health, NLM Products, Public Health
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As ClinicalTrials.gov celebrates its 20th anniversary on February 29, NLM is asking for input on how it can best continue to serve your needs for many more years to come. ClinicalTrials.gov is the world’s largest public clinical research registry and results database, giving patients, families, health care providers, researchers, and others easy access to information on clinical studies relating to a wide range of diseases and conditions. This online resource, which has more than 145,000 unique visitors every day, is operated by NLM and makes available information provided directly by the sponsors and investigators conducting the research.

NLM has launched an effort to modernize ClinicalTrials.gov to deliver an improved user experience on an updated platform that will accommodate growth and enhance efficiency. Creating a roadmap for modernization requires feedback from a wide array of stakeholders on how to continue serving, balancing, and prioritizing their varied information needs. These stakeholders include sponsors and investigators who submit clinical trial information to the site, academic institutions, nonprofit and advocacy organizations, government agencies, and the public, all of whom can access and use the information that ClinicalTrials.gov contains free of charge.

To obtain timely, detailed, and actionable input, a Request for Information (RFI) has been issued to solicit comments on the following topics: website functionality, information submission processes, and use of data standards. Recognizing that ClinicalTrials.gov supports a network of stakeholders who contribute to, and rely on, clinical research, the aim is to understand how the system can better support this network and to identify opportunities for improving its compatibility with existing clinical trial management tools and processes. It is important to note that this RFI focuses on the functionality of ClinicalTrials.gov and is not intended to modify existing legal and policy requirements for clinical trial registration and results submission.

Responses to the RFI must be received by March 14. NLM expects a wide range of comments and is taking steps to manage and share the feedback. Responses will be summarized during a public meeting on April 30 on the main campus of the National Institutes of Health in Bethesda, that will also be accessible by webcast. Details on the meeting will be available soon. In addition, the NLM Board of Regents is being engaged to provide input as a roadmap for modernization is developed, including establishing priorities and identifying the roles that various stakeholders might play in modernizing ClinicalTrials.gov.

To learn more about the RFI and how to share feedback, join this webinar on January 22. NLM looks forward to working with everyone to learn more about — and consider how to meet — your needs as the multiyear modernization effort begins!

Image of the author ABOUT Alan Carr
Alan Carr is the Associate Director, National Network of Libraries of Medicine, Pacific Southwest Region, based at UCLA.

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This project is funded by the National Library of Medicine, National Institutes of Health, Department of Health and Human Services, under Cooperative Agreement Number UG4LM012341 with the UCLA Louise M. Darling Biomedical Library.

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