Rallying 2016: Agenda

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.


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?
What did we learn from Rallying to the Challenge: Outcome Measures (2015) that makes the theme for Rallying 2016 so pertinent?
Dr. Jon Stamford—Co-founder, Parkinson’s Movement

10:30 a.m.
Presentation: Health Confidence
Peter Schmidt, National Parkinson Foundation

11:00 a.m.

11:20 a.m.
2016 survey findings
David Jones—Parkinson’s advocate
Richard Windle—Parkinson’s advocate

12:10 p.m.

12:30 p.m.
Panel discussion: All your questions answered (during lunch)
Dr. Patrik Brundin and others

1:30 p.m.
Ray Dorsey navigates the measurement world in Parkinson’s

2:00 p.m.
What do we mean by 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

2:20 p.m.
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?
3:20 p.m.

3:30 p.m.
Feedback from focus groups

4:15 p.m.
What data would improve health outcomes?
John Dean—Davis Phinney Foundation

5:00 p.m.
What data supports research into cures?
Panel discussion (chaired by Patrik Brundin, M.D., Ph.D.)

5:30 p.m.
Meeting closes

Winning goal redTUESDAY, SEPT. 27, 2016

9:00 a.m.

9:15 a.m.
Motivation to contribute data
Speaker to be announced

9:50 a.m.
Individual classifiers of an individual’s Parkinson’s
Stephen Friend—Sage Bionetworks

10:30 a.m.
Summary of activities: Focus group feedback and brainstorm findings

11:00 a.m.

11:20 a.m.
Ethical considerations around data collection, sharing, ownership and evaluation
Speaker to be announced

11:40 a.m.
Data ownership
Speaker to be announced

12:30 p.m.

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 close


  • Rallying to the Challenge 2016: Data, Data, Data  This year’s theme for Rallying to the Challenge was the issue of data:  big data, small data, personal data, impersonal data, what’s useful and what’s not, and how data could and should be used. Collecting information about our personal experiences can inspire…
  • What is Rallying to the Challenge?Rallying to the Challenge, hosted by  The Cure Parkinson’s Trust and Parkinson’s Movement, brings together people with Parkinson’s and advocates from around the world to devise ways to positively impact clinical trials and research.This conference has one simple aim – to involve people living with…
  • Take a look at a few of the surveys we recommend to express your individual views and opinions on these topics in Parkinson’s Disease.   Rallying 2017: Perceptions of risk   University of Lisbon survey: Swimming & Parkinson's   The Parkinson Alliance Survey: Vision and Parkinson's   Describing your Parkinson's  …
  • This is a journey I started around four years ago after being diagnosed with Parkinson’s, I had an idea that, to me, seemed relatively simple yet there were people telling me that it couldn’t be done as no one had done it before. Was it really such an unreasonable expectation…