Building a collaborative data sharing portal for Alzheimer's disease research

The AMP-AD Knowledge Portal provides data, analysis results, and tools to support research into new therapies for Alzheimer's Disease. Over 260 researchers have contributed to the data available in the portal, which ranges in type from genomic to behavioral, and includes over 5800 individuals. This talk will present the portal's development as a case study in collaborative research and development among scientists, data curators, engineers, designers, governance experts, users, and many others. We will present on the portal's evolution, and discuss how our approach to collaboration and data curation has evolved to support the Alzheimer's disease research community.

Transcript

1. Building a collaborative data
   sharing portal for Alzheimer's
   disease research
   WNAR June 24, 2019
   Kara Woo | @kara_woo
   

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2. Kara H. Woo, Mette A. Peters, Anna K.
   Greenwood, Benjamin A. Logsdon, Yooree
   Chae, Meagan Bemer, Solveig K. Sieberts,
   Kenneth Daily, Zoë Leanza, Christine Suver,
   Megan Doerr, Kelsey Montgomery, Phil Snyder,
   Sumit Mukherjee, Jake Gockley, William
   Poehlman, Tess Thyer, Ljubomir Bradic,
   Stockard Simon, Duminda Aluthgamage,
   Woody MacDuffie, Thanneer Perumal,
   Meredith Slota, Michael Barakat, Michael Lee,
   Jay Hodgson, John Hill, Bruce Hoff, Michael
   Kellen, Larsson Omberg, Lara M. Mangravite,
   and the AMP-AD, M2OVE-AD, MODEL-AD,
   and Resilience-AD consortia
   

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3. https://ampadportal.org/
   

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4. AMP-AD Knowledge Portal
   ● Multi omics data, behavioral, imaging, and more
   ● Human brain samples, mouse and Drosophila models, cell
   lines
   ● 5800+ individuals, 50+ studies
   ● We integrate data from different groups
   

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5. Building this
   data portal
   requires lots of
   collaboration.
   

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6. A non-exhaustive list
   ● Data sharing
   ● Design & engineering
   ● Engagement
   

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7. Data sharing
   

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8. Aleksander Fedyanin
   Collaborators
   provide metadata in
   standard templates
   

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9. Thomas Drouault
   We collaborate with domain
   experts to develop
   metadata templates
   

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10. greebile
    https://www.flickr.com/photos/greeblie/3338710223/
    We maintain controlled vocabularies
    of metadata terms
    

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11. We build tools to
    help researchers
    check their data
    

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12. José Manuel de Laá
    individual 

    collaboration
    efficient,
    scalable
    processes
    

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13. Eric Rothermel
    Data is released
    twice per year
    

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14. Design & engineering
    

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15. Kaleidico
    Collaboration is
    not just among
    scientists
    

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17. We conduct ongoing user
    research to improve the portal
    You X Ventures
    

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18. Engagement
    

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19. Perry Grone
    Dedicated community manager
    promotes collaboration
    

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20. Zoë Leanza
    Outreach
    encourages new
    collaborations
    

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21. It hasn’t
    always
    been
    this
    way
    Jukan Tateisi
    

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22. Suzanne D. Williams
    

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25. Suzanne D. Williams
    

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26. Jamie Street
    

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27. Chevysmom
    https://www.flickr.com/photos/chevyloubear/7249577206/
    

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28. trust
    

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29. credibility + reliability + intimacy
    self-orientation
    trust
    Maister et al., The Trusted Advisor
    =
    

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30. credibility + reliability + intimacy
    self-orientation
    trust
    Maister et al., The Trusted Advisor
    =
    

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32. Collaboration isn’t only between
    scientists, or grantees.
    

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33. Building trust takes many types of work,
    and is crucial to effective collaboration.
    Collaboration isn’t only between
    scientists, or grantees.
    

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