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
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
3. https://ampadportal.org/
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
5. Building this data portal requires lots of collaboration.
6. A non-exhaustive list • Data sharing • Design & engineering • Engagement
7. Data sharing
8. Aleksander Fedyanin Collaborators provide metadata in standard templates
9. Thomas Drouault We collaborate with domain experts to develop metadata templates
10. greebile https://www.flickr.com/photos/greeblie/3338710223/ We maintain controlled vocabularies of metadata terms
11. We build tools to help researchers check their data
12. José Manuel de Laá individual 
 collaboration efficient, scalable processes
13. Eric Rothermel Data is released twice per year
14. Design & engineering
15. Kaleidico Collaboration is not just among scientists
17. We conduct ongoing user research to improve the portal You X Ventures
18. Engagement
19. Perry Grone Dedicated community manager promotes collaboration
20. Zoë Leanza Outreach encourages new collaborations
21. It hasn’t always been this way Jukan Tateisi
22. Suzanne D. Williams
25. Suzanne D. Williams
26. Jamie Street
27. Chevysmom https://www.flickr.com/photos/chevyloubear/7249577206/
28. trust
29. credibility + reliability + intimacy self-orientation trust Maister et al., The Trusted Advisor =
30. credibility + reliability + intimacy self-orientation trust Maister et al., The Trusted Advisor =
32. Collaboration isn’t only between scientists, or grantees.
33. Building trust takes many types of work, and is crucial to effective collaboration. Collaboration isn’t only between scientists, or grantees.