Our second 'Rallying' Meeting took place on Wednesday 30th September during the Grand Challenges in Parkinson's Disease event in Grand Rapids, Michigan.
Wednesday, September 30
10:30 am: Tom Isaacs (Co-founder and president, The Cure Parkinson’s Trust): Rallying to the Challenge II
10:45 am: Progress from Rallying to the Challenge I (series of 15-minute presentations)
– Jon Stamford, Ph.D., D.Sc. (Scientific and advocate communication coordinator, The Cure Parkinson’s Trust): Clinical trials charter
– Israel Robledo (Parkinson’s Movement Steering Committee member) and Richard Windle (Research Support Network Advocate, Parkinson’s UK): Experience to expertise
– David Ashford-Jones (Owner, Sagio Ltd.; Parkinson’s advocate): Risk and benefit
— Steve DeWitte (CEO, Connecticut Advocates for Parkinson’s) and Richard Windle (Research Support Network Advocate, Parkinson’s UK): Patient-centered research
Lunch/Panel discussion with Patrik Brundin*, M.D., Ph.D.; Caroline Tanner, M.D., Ph.D.; and others.
1:00 pm: Tom Isaacs (Co-founder and president, The Cure Parkinson’s Trust)
Outcomes and measures: How do Ralliers define “patient-centered outcome measures”? Is there the opportunity to introduce patient-centric change?
1:30 pm: Dr. Jon Palfreman (Award-winning author, journalist and documentary film producer)
Self monitoring in Parkinson’s: Who/what is it good for? Why is measurement important? Why are current measures flawed?
2:30 pm: Dr. Jon Stamford (Scientific and advocate communication coordinator, The Cure Parkinson’s Trust)
Can we gain consensus on what should be measured? (includes survey result presentation and discussion)
3:00 pm: Focus group session: Parkinson’s symptoms – it’s personal
Investigating individual prioritized symptoms in terms of frequency, severity, individuality, impact on wellness, impact on other symptoms, “communicate-ability” about the symptom, measurability
4:30 pm: Feedback from focus groups
5:00 pm: Moderated by Helen Matthews
How can we use the feedback from the focus groups to build a Parkinson’s specific rating scale for measurement tools that focuses on an individual’s symptom priorities: usability, relevance to Parkinson’s ability to record symptomic change, wellness and lifestyle aspects
Thursday, October 1
9:00 am: Soania Mathur, M.D. - Introduction
9:10 am: 15–20 minute presentations:
-*Ken Kubota, Director of Data Science for Research Programs, Michael J. Fox Foundation for Parkinson’s Research: Fox Insight
–Bruce Hellman, CEO, uMotif: What questions can we ask of Big Data?
–Walter Maetzler, M.D., Professor, Centre of Neurology and Hertie-Institute for Clinical Brain Research, University Hospital Tuebingen: PwPs+Clinicians+Technicians=How to measure
–Anupam Pathak, Ph.D., Google
–Bas Bloem, M.D., Ph.D., ParkinsonNet
15–20 minute presentations:
-Peter Schmidt, Ph.D., Chief information officer, vice president of research programs, National Parkinson Foundation—Parkinson’s Outcomes Project
–Eli Pollard, Executive director, World Parkinson Coalition—World Parkinson Coalition’s exercise program in association with Brian Grant Foundation
–Max Little, Ph.D.—Parkinson’s Voice Initiative
–Caroline Tanner, M.D., Ph.D., Director of clinical research, The Parkinson’s Institute—Integrating patient-relevant measures into clinical trial design: The Apple app
12:45: Lunch and panel with Dr. Patrik Brundin and others.
1:45: Feedback presentation to Grand Challenges in Parkinson’s Disease: Applying the right measure to the right person in the right situation
- GRAND RAPIDS, Mich. (February 22, 2016)—A medication approved to treat various respiratory diseases and that has demonstrated neuroprotective effects in preclinical studies is the focus of a new clinical trial for Parkinson’s disease. The trial is the latest to be launched as part of the Linked Clinical Trials (LCT) initiative,…
- Progress in Parkinson’s, both in terms of its management and improvements to its treatment, is extremely slow. There have been advances in the understanding of Parkinson’s and there is the very real possibility of therapies with the capacity to modify the course of the condition in the pipeline. However, these…
- Parkinson’s is a neurodegenerative disease, meaning that it gets worse as time goes by and there is no cure. If you think about it, life itself shares those characteristics, but there is one important difference. For us having Parkinson’s, the downhill slope is much steeper than for people without a…