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NIH AD/ADRD Platforms Workshop: FAIRness Within and Across Data Infrastructures


Data scientists, informaticians, ethicists, AD/ADRD researchers, and research participants with an interest in establishing FAIR and interoperable AD/ADRD resources.


June 20, 2023 | 11:00 a.m. - 4:00 p.m. ET

June 21, 2023 | 11:00 a.m. - 4:00 p.m. ET

Meeting Recordings

Watch Other Videos from the Workshop:

Workshop materials and recordings are also being shared through the Open Science Foundation (OSF), which allows the content to be linked through a DOI, promotes FAIR practices, and provides citation instructions. View the OSF project

Meeting Summary

Read the AD/ADRD Platforms Workshop Meeting Summary (PDF, 721K).

Purpose and Background

On June 20th and 21st, 2023, the Division of Neuroscience (DN) at the National Institute on Aging (NIA) hosted a virtual workshop convening major NIA-supported AD/ADRD data infrastructures along with data ecosystems from across the National Institutes of Health (NIH) to explore opportunities and challenges for nurturing data ecosystems that (i) promote FAIR (i.e., findable, accessible, interoperable, and reusable) data principles within and across constituent platforms and (ii) support open and inclusive data access and compute resources by researchers and other stakeholders.

This workshop explored (i) how biomedical data ecosystems ensure effective discovery and use of data and analytical resources; (ii) the technical, social, and policy solutions that enable such practices; and (iii) the ongoing challenges and opportunities to increase the impact of valuable data resources. The workshop agenda featured:

  • Introductions to major AD/ADRD knowledge infrastructures, including how they make their resources FAIR, and highlight collaborations and linkages to other data/knowledge resources.
  • A session on the ethical, legal, and social implications (ELSI) associated with data linkages, which may increase the usefulness and impact of data resources yet also raise important privacy and security concerns.
  • A session on diversity, equity, inclusion, and accessibility for study participants and researchers.
  • Breakout groups in which participants may join focused discussion of topics such as data access and security, data linkage and harmonization, data ecosystem architectures, DEIA in an AD/ADRD ecosystem, and data analysis.


Note: This agenda is in Eastern Daylight Time.

Day 1 (Tuesday, June 20)

11:00 a.m. Session 1 | Overview and Keynote Address

Workshop Co-Chairs: Stanley Ahalt, PhD, UNC Chapel Hill and Lara Mangravite, PhD, HIBio

  • Welcoming Remarks, Richard Hodes, MD, NIH/NIA
  • Overview of the NIH Data Strategy, Susan Gregurick, PhD, NIH/ODSS
  • Keynote: Principles of a Data Biosphere, Benedict Paten, PhD, UC Santa Cruz
  • Session 1 Q&A

Lunch Break

12:45 p.m. Session 2 | Current NIH Data Ecosystems

Session Chair: Jack DiGiovanna, PhD, Seven Bridges

  • Introduction to Current NIH Data Ecosystems, Jack DiGiovanna, PhD, Seven Bridges
  • NCI Cancer Research Data Commons (CRDC), Tanja Davidsen, PhD, NIH/NCI
  • NIH Common Fund Data Ecosystem (CFDE)/KidsFirst, George Papanicolaou, PhD, NIH/OD
  • National COVID Cohort Collaborative (N3C), Kenneth Gersing, MD, NIH/NCATS
  • NHGRI Genomic Data Science Analysis, Visualization, and Informatics Lab-space (AnVIL) and NIH CLoud PLatform Interoperability Effort (NCPI), Michael Schatz, PhD, Johns Hopkins University
  • BioData Catalyst, Regina Bures, PhD, NIH/NHLBI
  • Session 2 Q&A


2:20 p.m. Session 3 | ELSI of Data Sharing

Session Chair: Patricia Jones, DrPH, NIH/NIA

  • Introduction to the ELSI of Data Sharing, Patricia Jones, DrPH, NIH/NIA
  • Establishing an Ecosystem that Fosters DEIA, Michael Griswold, PhD, University of Mississippi
  • "Nothing About Us Without Us:" Meaningful Engagement of Tribal Communities in Research, Spero Manson, PhD University of Colorado Anschutz
  • Technical Solutions for De-identification, Lucila Ohno-Machado, MD, PhD, Yale University
  • Session 3 Q&A

Day 2 (Wednesday, June 21)

11:00 a.m. Welcome and Recap of Day One

Workshop Co-Chairs: Stanley Ahalt, PhD, UNC Chapel Hill and Lara Mangravite, PhD, HIBio

11:10 a.m. Session 4 | AD/ADRD Knowledge Environments

Session Chair: Maryann Martone, PhD, UC San Diego

  • Current State of AD/ADRD Knowledge Environments, Maryann Martone, PhD, UC San Diego
  • NIH-sponsored AD/ADRD Data Platforms, Eliezer Masliah, MD, NIH/NIA
  • AD Knowledge Portal: Enabling FAIR Data Infrastructure for Research on AD/ADRD, Anna Greenwood, PhD, Sage Bionetworks
  • NIA Genetics of Alzheimer’s Disease Data Storage Site Li-San Wang, PhD (NIAGADS), Li-San Wang, PhD, University of Pennsylvania
  • National Alzheimer’s Coordinating Center (NACC), Sarah Biber, PhD, University of Washington
  • Laboratory of Neuro Imaging (LONI), Arthur Toga, PhD University of Southern California
  • NIH Center for Alzheimer’s and Related Dementias (CARD), Mike Nalls, PhD, Data Tecnica International
  • Session 4 Q&A

Lunch Break

1:00 p.m. Session 5 | Breakout Groups

Workshop Co-Chairs: Stanley Ahalt, PhD, UNC Chapel Hill and Lara Mangravite, PhD, HIBio

  • Introduction to Breakout Groups, Stanley Ahalt, PhD, UNC Chapel Hill, Lara Mangravite, PhD, HIBio
  • Breakout Groups:
    • Data Security and Access
      • Moderator: Robert Grossman, PhD, University of Chicago
    • Data Linkage and Harmonization
      • Moderator: Shankar Subramaniam, PhD, UC San Diego
    • Data Ecosystem Architectures
      • Moderator: Brian O’Connor, PhD, Sage Bionetworks
    • Promoting DEIA in Data Ecosystems
      • Moderator: Samson Gebreab, PhD, NIH/ODSS
    • Data Analysis Within Data Ecosystems
      • Moderator: Sean Mooney, PhD, University of Washington
  • Breakout Group Reports, Stanley Ahalt, PhD, UNC Chapel Hill, Lara Mangravite, PhD, HIBio
  • Meeting Summary
  • Adjourn

List of ADRD Platforms and Centers Publications

Centers and Platforms Consortia Data Type* Human Non-Human Analytical Tools Keystone Publication(s)
AD Knowledge Portal Genetics, genomics, epigenomics, transcriptomics, proteomics, metabolomics, and lipidomics. X X X
NIH Center for Alzheimer's and Related Dementias (CARD) iPSC Neurodegenerative Disease Initiative (iNDI) genomics, proteomics, and lipidomics X n/a X
Laboratory of NeuroImaging Image and Data Archive (LONI-IDA) Alzheimer’s Disease Neuroimaging Initiative (ADNI) Brain imaging, genetics, exam and assessment, biospecimen. X X X
NIA Genetics of Alzheimer's Disease Data Storage Site (NIAGADS) Genetics, genomics, proteomics, epigenetics, memory trajectories, polygenic hazard scores, genome-wide summary statistics, phenotypes. X n/a X

* = This is a list of the primary data types supported by these repositories so there may be additional data types not represented. Please visit the repository or platform website for additional information on supported data types.

Contact Information

Please contact Jennie Larkin ( 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 1 week before the event.

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