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The workshop sessions are to highlight secondary use research that utilized resources generated from NIDDK-funded clinical research projects, review NIDDK’s Data Ecosystem past, present, and future, and launch a data challenge platform as part of the program’s vision for the future.
Meeting Objectives
The virtual meeting will review the NIDDK Central Repository program from its early beginnings to its current state and the vision for the future as an integral component of the NIDDK Data Ecosystem. Experts in the field and selected innovative secondary research works directly resulting from the use of Repository resources will be featured throughout the 2-day event.
We will engage diverse and multidisciplinary experts from the research community to promote Repository resources and the Repository program’s broad research portfolio. Repository staff will demonstrate the use of the web-based platform and provide guidance on procedures to gain access to resources.
This activity is directly aligned with NIH and NIDDK’s Strategic goals to maximize the value and impact of resources generated through NIH-funded research, advance the biomedical data ecosystem, and enhance data resources that facilitate research, catalyze the scientific discovery, and improve health outcomes.
Registration Deadline
September 19, 2023
Agenda
September 19, 2023
10:00 a.m. – 10:15 a.m.
Welcome and Opening Remarks
Griffin P. Rodgers, M.D., M.A.C.P., Director, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH)
Gregory Germino, M.D., Deputy Director, NIDDK, NIH
10:15 a.m. – 10:45 a.m.
Session I: Reflecting on 20 Years of the NIDDK Central Repository: Embracing our Legacy and Shaping our Future
Rebekah Rasooly, Ph.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development, (NICHD), NIH Rebecca Rodriguez, Ph.D., NIDDK, NIH
10:45 a.m. – 11:15 a.m.
Session II: Modernizing the Data Repository Ecosystem to Accelerate the Pace of Biomedical Research—Plenary Session
Patricia Flatley Brennan, RN, Ph.D., Director, National Library of Medicine (NLM), NIH
Exciting things are happening with data powered research and clinical care! A life-cycle approach provides a roadmap for ensuring high-quality data collection, sharing and reuse of data collected through biomedical research and data collected in the course of clinical care. Data repositories, whether stewarded by the NIH or supported by NIH in the extramural community, represent an important research investment.
11:15 a.m. – 12:15 p.m.
Workshop I: Accessing NIDDK Central Repository Resources Alissa Fujimoto, M.S., Kylie Snow, M.P.H., and Sashawn Lawrence, M.P.H., Booz Allen Hamilton
Learn how to navigate and access resources, discuss challenges and opportunities with using secondary data, and to identify the appropriate data sets and biospecimens for your research.
12:15 p.m. – 12:45 p.m.
Break
12:45 p.m. – 1:50 p.m.
Lightning Talk Session I: Methods or Biomarker Discovery in Diabetes, Kidney, and Urologic Diseases
Listen to selected X01, R01, and Administrative Review Awardees discuss their scientific discoveries in disease mechanisms, pathogenic processes, progression, and clinical responses achieved or made possible with resources available through NIDDK-CR.
Invited Speakers Lightning Talk Session 1:
Myra Lipes, M.D., Harvard Medical School
James Checco, Ph.D., University of Nebraska-Lincoln
Miriam Vos, M.D., M.S.P.H., Emory University School of Medicine
Teresa Chen, M.D., M.H.S., University of California San Francisco
1:50 p.m. – 2:45 p.m.
Session III: Evolution of the Traditional Repositories - NIDDK-CR and Others’—Moderated Panel Discussion
Listen to NIH and field experts discuss common challenges working with disparate data sets and opportunities in the use of technology to improve and integrate legacy data across studies.
Moderator: Mike Keller, Ph.D., Booz Allen Hamilton Invited Panelists:
Veerasamy Ravichandran, Ph.D., NIDDK, NIH
Xujing Wang, Ph.D., NIDDK, NIH
Eric Brunskill, Ph.D., NIDDK, NIH
Regina Bures, Ph.D., National Heart, Lung, and Blood Institute (NHLBI), NIH
Dawei Lin, Ph.D., National Institute of Allergy and Infectious Diseases (NIAID), NIH
2:45 p.m. – 3:00 p.m.
Recap and Day One Closing Remarks
3:00 p.m.
Adjournment
September 20, 2023
10:00 a.m. – 10:05 a.m.
Day Two Welcome and Remarks
Rebecca Rodriguez, Ph.D., NIDDK, NIH
10:05 a.m. – 10:45 a.m.
Session IV: FAIRization of NIH-generated Resources: Meeting the Intent of the 2023 Data Management and Sharing Policy
Listen to expert panelists discuss practical applications of FAIR principles for data and biospecimen deposition and sharing for secondary uses with examples of what it means to make resources “FAIR” in meeting the intent of the 2023 DMS policy.
Moderator: Erik Schultes, Ph.D., Leiden University Invited Panelists:
Robin Taylor, M.L.L.S., NLM, NIH
Marianne Henderson, M.S., CPC, PMP, National Cancer Institute (NCI), NIH
M. Todd Valerius, Ph.D., Brigham and Women’s Hospital
Jen Darragh, M.L.I.S., Duke University Libraries
10:45 a.m. – 11:30 a.m.
Session V: Secondary Research: Breakthroughs and Innovation (an Informaticist Perspective)—Plenary Session
Yasir Tarabichi, MD, M.S.C.R., Director of Clinical Research Informatics, MetroHealth
11:30 a.m. – 12:30 p.m.
Workshop II: NIDDK-CR Analytics Workspace Demo Anya Dabic, B.S., Booz Allen Hamilton Courtney Shelley, Ph.D., Booz Allen Hamilton
Learn how to navigate and access NIDDK-CR resources: Demonstration of new analytics workspace and unveiling of the Data-centric Challenge (additional information coming soon!).
12:30 p.m. – 12:50 p.m.
Break
12:50 p.m. – 2:00 p.m.
Lightning Talk Session II: NIDDK-CR Data Secondary Analyses, Qualitative and Mixed Methods Studies
Listen to selected Data Awardees present their discoveries in disease mechanisms, pathogenic processes, progression, and clinical responses achieved or made possible with resources available through NIDDK-CR.
Invited Speakers Lightning Talk Session 2:
Prasanna Santhanam, M.B.B.S., M.D., Johns Hopkins Medicine
Juhi Chaudhari, M.S., Tufts University School of Medicine
Sejal Mistry, Ph.D., University of Utah Health
Joseph Hedrick, Ph.D., Critical Path- Type 1 Diabetes Consortium
2:00 p.m. – 2:50 p.m.
Session VI: Supporting NIDDK-Funded Research and Expanding NIDDK’s Data Ecosystem—Panel Discussion
Listen to expert panelists provide examples of ways NIDDK-funded research is strengthening the data ecosystem and accelerating medical breakthroughs through secondary research.
