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

Kara Woo
June 24, 2019

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.

Kara Woo

June 24, 2019
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  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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  24. View Slide

  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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