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Gaps and Opportunities for Real-World Data: Stakeholder Workshop

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Target Audience

NIH-wide staff, NIH grantees, and relevant advocacy groups.


May 4, 2022, 10:30 a.m. to 5:30 p.m.


Webinar with a Q&A function for participants to ask questions.

Purpose and Background

NIA is convening an exploratory workshop to learn what gaps exist in current real-world data infrastructure and what opportunities lie in expanding availability of real-world data sources for aging and Alzheimer’s disease and related dementias research.

Workshop Report

Read the workshop report.


Wednesday, May 4 (all times are Eastern Time)

10:30 a.m.: Welcome Remarks and Charge, Richard Hodes, M.D., director, NIA

10:40 a.m.-12:05 p.m.: Session 1 | Overview of Current Infrastructure

  • Gaps and Opportunities in Current Real-World Data Infrastructure, Atul Butte, M.D., Ph.D., University of California Health System
  • RWD Infrastructure, the Alzheimer’s Association National Registry, and Opportunities for Improved Patient Outcomes, Maria Carrillo, Ph.D., Alzheimer’s Association
  • Real-World Evidence in Alzheimer’s Disease: The ROADMAP Data Cube, Olin Janssen, Maastricht University
  • Key Barriers to Clinical Trials for Alzheimer’s Disease, Niranjan Bose, Ph.D., Gates Ventures
  • Panel Discussion
    • David Dore, Ph.D., PharmD., Exponent
    • Barbara Entwisle, Ph.D., University of North Carolina
    • Stephanie Monroe, Ph.D., African Americans Against Alzheimer’s

12:20-1:45 p.m.: Session 2 | Recruitment and Clinical Trial Uses of Real-World Data

  • Overview and Possibilities of Real-World Data for Clinical Trials and Patient Experience, Adrian F. Hernandez, M.D., M.H.S., Duke University
  • Race and Ethnicity in Real-World Data Sources, Michelle E. Tarver, M.D., Ph.D., Food and Drug Administration
  • Recruitment for Alzheimer’s Disease Prevention Trials, Rema Raman, Ph.D., University of Southern California
  • Recruitment for Dementia Care Trials, Vincent Mor, Ph.D., Brown University
  • Panel Discussion
    • Malaz Boustani, M.D., Indiana University
    • Emily Largent, J.D., Ph.D., R.N., University of Pennsylvania
    • Corrie Painter, Ph.D., Broad Institute

2:15-3:40 p.m.: Session 3 | Secondary Data Uses of Real-World Data

  • Which Scientific Questions Can Be Answered with RWD?, Sebastian Schneeweiss, M.D., Sc.D., Harvard Medical School, Brigham and Women’s Hospital
  • RWD Linkages: Possibilities for NIA Longitudinal Studies, Maria Glymour, Sc.D., M.S., University of California, San Francisco
  • Using RWD for Identifying and Validating Drug Repurposing Candidates for AD/ADRD, Mark W. Albers, M.D., Ph.D., Harvard Medical School, Massachusetts General Hospital
  • Unification of Clinical Trial Data, Gabriel S. Eichler, Ph.D., Novartis
  • Panel Discussion
    • Julie Zissimopoulos, Ph.D., University of Southern California
    • Kenneth Langa, M.D., Ph.D., University of Michigan, Veterans Affairs
    • Marina Sirota, Ph.D., University of California, San Francisco

3:55-5:00 p.m.: Session 4 | Discussion on Infrastructure Gaps and Opportunities

  • Invited Comments:
    • Centers for Medicare and Medicaid Services Perspective, Shari M. Ling, M.D. and Steven Farmer, M.D.
    • Sudhir Sivakumaran, Ph.D., Critical Path Institute
    • Penny Dacks, Ph.D., The Association for Frontotemporal Degeneration
    • David Atkins, M.D., M.P.H., Veterans Affairs
    • Russ Paulsen, M.A., Us Against Alzheimer’s
    • Mark A. Supiano, M.D., University of Utah Center on Aging, American Geriatrics Society
    • Crystal M. Glover, Ph.D., Rush Alzheimer’s Disease Center
  • Invited Commenter Discussion: Building Equitable Real-World Data Infrastructure That Addresses Wide-Ranging Stakeholder Needs

5:00-5:30 p.m.: Session 5 | Closing Panel: Prioritizing Gaps and Opportunities for Using RWD in AD/ADRD Research

Contact Information

Please contact Shanna Breil,, for questions you may have about the workshop.

Reasonable Accommodation

If you need reasonable accommodation to participate in this event, please contact the meeting organizer listed under Contact Information. Please make your request no later than one week before the event.

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