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DTSTART;TZID=America/New_York:20260513T130000
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SUMMARY:Listening Session: National Institutes of Health’s All of Us Research Program (VIRTUAL)
DESCRIPTION:May 13\, 2026 | 1:00 – 1:45 p.m. ET\nListening Session: National Institutes of Health’s All of Us Research Program (VIRTUAL)\nAccelerating Discovery Through Partnered Research Studies Using All of Us Participant Data and Biosamples\nThe National Institutes of Health’s All of Us Research Program is hosting two listening sessions to discuss an upcoming program initiative requiring Tribal community input. This is the second of two listening sessions. The first listening session is in-person on April 28 at the NCUIH Conference. \nThe All of Us (AoU) Research Program was established to accelerate health research and medical discoveries so that everyone can get personalized healthcare to prevent and treat disease through an approach called precision medicine. The program remains committed to respectful and ongoing engagement with Tribal Nations regarding the use of data and samples (like blood\, urine or saliva) from self-identified American Indian and Alaska Native (AI/AN) participants. \nIn 2026\, AoU will accept researcher proposals for new studies using de-identified participant samples. Researchers outside of NIH will have the opportunity for the first time to propose Partnered Research Studies (PRS) and apply for access to AoU participant samples. Researchers from universities and colleges\, non-profit organizations\, private companies\, government agencies\, and other research institutions in the United States and around the world can apply to use AoU participant donated samples. \nUnderstanding Tribal sovereignty and consultation\, All of Us plans to exclude samples from self-identified AI/AN participants for selection until meaningful engagement and guidance is received from Tribal leaders\, Urban Indian organizations\, and Indigenous communities. \nDuring these listening sessions\, we will discuss and gather feedback on how AI/AN samples may be respectfully and safely included in future research initiatives and review current protections and policies regarding use of AI/AN data in All of Us. \nPresenters: \n\nDr. Minnkyong Lee\, Ph.D.\, Acting Chief Engagement Officer\nDr. Lee is the Acting Chief Engagement Officer for the NIH All of Us Research Program. Since 2017\, Dr. Lee has been working with All of Us awardees to identify and disseminate best practices in the engagement and retention of participants and researchers. Prior to All of Us\, she worked with animal models and big data at the National Human Genome Research Institute. In her spare time\, she has taught and volunteered at local institutions\, including Northern Virginia Community College\, the University of the District of Columbia\, the University of Maryland\, and the Marian Koshland Science Museum.\nDr. Josh Denny\, M.D.\, M.S.\, Chief Executive Officer\nDr. Denny is a medical doctor\, proud father of four children\, and Chief Executive Officer of the All of Us Research Program at the National Institutes of Health. Before leading All of Us\, he was a practicing physician and a leader in personalized medicine at Vanderbilt University Medical Center\, where he focused on using electronic health records and genetic information to better understand and treat disease. He is an elected member of the National Academy of Medicine and the American Society for Clinical Investigation\, and he has authored over 400 peer-reviewed publications.\nDr. Sheri Schully\, Ph.D.\, Deputy Chief Medical and Scientific Officer\nDr. Schully is the deputy chief medical and scientific officer and the lead for ancillary studies in the All of Us Research Program at the National Institutes of Health. Through her leadership\, she is establishing ancillary studies as a core and scalable capability of the program that will expand the cohort and deliver new phenotypic\, lifestyle\, environmental\, and biological data to the All of Us Researcher Workbench. Dr. Schully has been involved with shaping the program and setting the scientific vision and strategy since its inception. Prior to this role\, she was a team lead and senior advisor for disease prevention in the Office of Disease Prevention (ODP). There\, she led the effort to systematically monitor NIH investments in prevention research and assess the progress of that research. She also served as the team lead for the Knowledge Integration Team as well as a program officer in the Epidemiology and Genomics Research Program at the National Cancer Institute (NCI). She came to the NIH as an NCI-designated Presidential Management Fellow in 2005. Dr. Schully’s research interests include genomics\, personalized medicine\, and the integration of genetic and genomic information into clinical and public health practices. Her work has been published in numerous high-impact scientific journals. She earned both a Ph.D. in biological sciences with a concentration in population genetics and a B.S. in zoology with a minor in chemistry from Louisiana State University.\n\nThe listening session will focus on: \n\nProviding an overview of the All of Us.\nIntroducing the Partnered Research Studies (PRS) initiative.\nSoliciting input on the inclusion/exclusion of self-identified AI/AN biospecimens in PRS.\nGathering recommendations/concerns to inform the later Tribal Consultation.\n\nAudience: \n\nUIO ED/CEOs\nUIO Staff
URL:https://ncuih.org/event/listening-session-national-institutes-of-healths-all-of-us-research-program-virtual/
CATEGORIES:Listening Session
ATTACH;FMTTYPE=image/png:https://ncuih.org/wp-content/uploads/NIH-Listening-NCUIH-D027_V3_Web-V-scaled.png
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