Rallying 2014: Agenda

Rallying to the Challenge: Parkinson’s Movement at Grand Challenges took place on 24th and 25th September 2014

Agenda24th September 2014

9.00 Mr David Van Andel, Van Andel Institute

9.15 Jay Van Andel Award for Outstanding Achievement in Parkinson’s Research

Professor Andrew Lees

Challenges at a Glance: Grand Challenges Meeting

10.45 Tom Isaacs presents on The Urgent Unmet Needs of People with Parkinson’s

11.15 Taking compounds from the laboratory to the clinic: challenges in drug
development for Parkinson’s disease Professor Jeffrey Conn

11.45 New drugs for Parkinson’s – what are the Big Picture challenges?
Professor Karl Kieburtz

12.45 – 1.30 Survey Feedback on barriers to effective clinical trials presented by the Parkinson's Movement team and comments from audience

Rallying to the Challenge: Meeting Rooms 3104 and 3105

1.45 Meeting Objectives and Format
Israel Robledo and Steve DeWitte

1.55 The Role of Parkinson’s Movement in the Meeting
Dr Jon Stamford

2.05 Short Introduction to Other Organisations Present
PDF, MJFF, Davis Phinney, Brian Grant, Parkinson’s UK and CPT

2.30 Summary of Survey Results – The Barriers to Progress with Clinical trials in Parkinson’s – Can We Really Make a Difference.
The Linked Clinical Trials Model
Tom Isaacs

2.45 Defining the Scope of Breakout Sessions and Desired Outcomes
Allocation of rooms and participation
Helen Matthews

2.55 Breakout Sessions – People with Parkinson’s, a Constructive Resource for More Effective Clinical Trials

1. Communication and Practicalities
2. Improving Perceptions and Dispelling Myths
3. Teamwork/Partnership
4. The Future of Clinical Trials – PwP’s Shaping Best Practice
5. Learning About Clinical Trials – Speaker?

3.30 Tea/Coffee

4.00 Continuation of Breakout Sessions

Winning goal red25th September 2014

9.00 The benefits of teamwork
Brian Grant, ex-NBA star

9.15 Presentations from Breakout Sessions – 10 Minutes Each

10.30 Defining Our Presentation to the Grand Challenges Meeting Through Interactive Discussion

11.45 Lunch

Rejoin Grand Challenges meeting

1.00 Bernard Ravina, M.D., M.S.C.E, Voyager Therapeutics, USA
Challenges with trial design regarding disease-modifying therapies for neurodegenerative disease

1.30 Kuldip Dave PhD, Michael J Fox Foundation, USA
The Parkinson's Progression Markers Initiative (PPMI) Study update

2.15 Tom Isaacs (UK), Dr Jon Stamford (UK), Israel Robledo (US) and
Steve DeWitte (US)

Rallying to the Challenge talk
How people with Parkinson's can be a resource and contribute to more effective clinical trials

2.45 Caroline Tanner, M.D., Ph.D. – The Parkinson’s Institute and Clinical Center, USA
Optimising outcome measures for disease modification trials in Parkinson's disease

3:15 Michael A Schwarzschild, M.D., Ph.D. – Massachusetts General Hospital, USA
Non-imaging biomarkers as support clinical trials in Parkinson's disease

3.45 David Brooks, Ph.D. – Imperial College of London, United Kingdom
Brain imaging and disease-modification in Parkinson's disease

4.30 Conference Discussion/Closing Remarks


  • By Soania Mathur, Steve DeWitte, Israel Robledo, Tom Isaacs, Jon Stamford   Despite an urgent need for new medications, clinical trials in Parkinson's have a relatively low success rate. Although many reasons have been proposed for this, the opinions of patients and scientists, the two principal stakeholders, have not been…
  • 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…
  • Rallying to the challenge 2014 focused on how people with Parkinson’s (PwP) can strongly influence the effectiveness of clinical trials. Clinical trials are essential in assessing how effective or safe treatments are as well as advancing a greater understanding about a condition. The process of medicine development from test-tube to…
  • At our patient advocate Rallying to the Challenge Meeting in 2014 it was unanimously agreed in the value of developing a clinical trials charter to significantly improve communication between those taking part in trials and those running clinical trials. The Charter was developed by people living with Parkinson's and clinicians…
  • 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,…