Sept. 6, 2016
The third Rallying to the Challenge meeting will be held in parallel with Grand Challenges in Parkinson’s Disease on Sept. 26-27, 2016 at Van Andel Institute in Grand Rapids, Mich.
Genes and Pathways
Grand Challenges in Parkinson’s Disease: Genes and Pathways will bring together hundreds of scientists, clinicians, people with Parkinson’s and caregivers to explore the latest in Parkinson’s disease research. This year’s theme will focus on the role of genetics in Parkinson’s, particularly how certain genes and pathways contribute to disease pathogenesis and how they can be targeted for diagnostic and therapeutic purposes. For the third year, VARI and The Cure Parkinson’s Trust will host Rallying to the Challenge, a meeting for people with Parkinson’s, advocates and caregivers that explores how the Parkinson’s community can impact and accelerate research.
10:00 a.m.
Welcome film
Tom Isaacs—Co-founder, Parkinson’s Movement
10:15 a.m.
Why data, data, data?
An introduction to terminology
Dr. Jon Stamford—Co-founder, Parkinson’s Movement
10:30 a.m.
Presentation: Health Confidence
Peter Schmidt, National Parkinson Foundation
11:00 a.m.
Break
11:20 a.m.
2015 recap
What did we learn from Rallying to the Challenge 2015: Outcome Measures that makes the theme for Rallying to the Challenge 2016 so pertinent?
Jill Carson, Park’n’Go
11:40 a.m.
2016 survey findings
David Jones—Parkinson’s advocate
Richard Windle—Parkinson’s advocate
12:10 p.m.
Lunch
12:30 p.m.
Lunch with the Laureate
Over lunch question-and-answer session with Nobel Laureate Dr. Paul Greengard
Chaired by Israel Robledo, Parkinson’s Movement
1:30 p.m.
Big Data
What questions do we want answered by Big Data? What are the most useful data needed that would improve a.) research and b.) care?
Brainstorm chaired by Dr. Jon Stamford and other Parkinson’s Movement representatives
2:00 p.m.
Small Data
Individual case studies for focus groups
- What data is needed vs what data is offered and is engaging for people to give?
- How we can collect relevant data from PWP with the quality and in the quantity required to allow experiences to drive the research agenda? How do we engage sufficient numbers of people with Parkinson’s in recording information about themselves?
- What controls do we need in place?
3:00 p.m.
Break
3:15 p.m.
Feedback from focus groups
3:45 p.m.
What data would improve health outcomes?
John Dean—Davis Phinney Foundation
4:15 p.m.
Special presentation
Genes and Parkinson’s—Providing the answers or framing the questions
Dr. John Hardy, University College London
5:00 p.m.
Daily wrap-up
Steve DeWitte and Israel Robledo
5:15 p.m.
Day closes
TUESDAY, SEPT. 27, 2016
9:45 a.m.
Kick-off
Summary of activities: focus group feedback and brainstorm findings
10:00 a.m.
Opportunities and challenges arising from the Big Data explosion: Putting data to work for the benefit of patients
Neil Stokes, IBM
10:30 a.m.
Presentation
Individual classifiers of an individual’s Parkinson’s
Stephen Friend—Sage Bionetworks
11:00 a.m.
Break
11:20 a.m.
Whose data? Ethical considerations around data collection, sharing, ownership and evaluation
Dr. Jon Stamford, Parkinson’s Movement
11:50 a.m.
Soapbox: Matters arising
Speakers from the audience (a chance to raise issues not so far covered in the program)
12:30 p.m.
Lunch
12:45 p.m.
Panel discussion: All your questions answered (during lunch)
Dr. Patrik Brundin and others
1:45 p.m.
Feedback presentation to Grand Challenges in Parkinson’s Disease: What data should we collect and how should that data be used?
Dr. Jon Stamford, David Jones, Richard Windle and others
2:15 p.m.
Rallying to the Challenge meeting closes
WHERE
- Van Andel Research Institute
333 Bostwick Ave NE
Grand Rapids, Michigan 49503
USA
616.234.5684To Register:https://www.cvent.com/events/grand-challenges-symposium-2016/registration-4a89461e39f941babe8ff455aca45117.aspxhttp://grandchallengesinpd.org
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