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TRANSLATE

Tuesday, September 6, 2016

Grand Challenges in Parkinson's Disease

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.
MONDAY, SEPT. 26, 2016
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 JonesParkinson’s advocate
Richard WindleParkinson’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 agendaHow 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 DeanDavis 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 FriendSage 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
    616.234.5684

    To Register:
    https://www.cvent.com/events/grand-challenges-symposium-2016/registration-4a89461e39f941babe8ff455aca45117.aspx

    http://grandchallengesinpd.org

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