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

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

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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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https://ampadportal.org/

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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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Building this data portal requires lots of collaboration.

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

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Data sharing

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Aleksander Fedyanin Collaborators provide metadata in standard templates

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Thomas Drouault We collaborate with domain experts to develop metadata templates

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

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We build tools to help researchers check their data

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José Manuel de Laá individual   collaboration efficient, scalable processes

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Eric Rothermel Data is released twice per year

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Design & engineering

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Kaleidico Collaboration is not just among scientists

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

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Engagement

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Perry Grone Dedicated community manager promotes collaboration

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Zoë Leanza Outreach encourages new collaborations

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It hasn’t always been this way Jukan Tateisi

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Suzanne D. Williams

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Suzanne D. Williams

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Jamie Street

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

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trust

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

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

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Collaboration isn’t only between scientists, or grantees.

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