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Request for Information: Submit Research Questions to Inform Development of the NIH All of Us Research Program!

Posted by on January 31st, 2018 Posted in: All of Us, Announcements, Consumer Health, Data, Outreach, Precision Medicine, Public Health

The National Institutes of Health has issued a Request for Information (RFI) to solicit public input to inform future updates to the All of Us Research Program that would be of most benefit to participants, researchers, and the broader community. The information provided will help identify key research priorities and requirements (such as data types and methods) for future versions of the All of Us protocol. All responses must be submitted online by February 23 through the program’s IdeaScale website. The RFI solicits “use cases,” or input on health problems or research questions of interest that All of Us could potentially help address.

The All of Us Research Program will make all responses available on the website as a searchable reference and as a principal database of use cases and requirements for informing future plans for All of Us. An advantage of using Ideascale is that it provides the opportunity to see what others have added as research ideas. Over 250 have already been submitted! Another feature is the ability to vote on your favorite ideas or comment on submissions. Commenting is a great way to start a dialogue with other submitters. All responses will be considered at the All of Us Research Priorities Workshop, scheduled for March 21–23 in Bethesda, MD.

The mission of the All of Us Research Program is to advance the science of precision medicine and ensure everyone shares in its benefits. The overall objective of the program is to build an observational research resource that will provide the information needed to address a wide range of scientific questions, facilitating the exploration of biological, clinical, social, and environmental determinants of health and disease. It will be one of the larges, most diverse datasets of its kind for health research. The program will collect and curate health-related data and biospecimens from one million or more individuals who reflect the diversity in the United States and will sign up to share their information over time. These data and biospecimens will be made broadly available for research uses. Researchers will be able to access participants’ de-identified information for a variety of studies to learn more about the factors that influence health and disease. Their findings may lead to more individualized health care approaches in the future.

The program is currently in beta testing, with a national launch anticipated in spring 2018. Once enrollment opens nationally, volunteers over the age of 18 who live in the United States will be able to join All of Us, either directly through the website or through participating health care provider organizationsAll of Us aims to be open to all interested individuals, to reflect the rich diversity of America and to serve as a catalyst for innovative research programs and policies.

This is a unique opportunity to share your research ideas with the All of Us Research Program! Feel free to send any questions about this process to AoURPW@nih.gov.

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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