Rallying to the Challenge 2015

More than 100 people with Parkinson’s joined us for the second Rallying to the Challenge meeting at the Van Andel Research Institute (VARI) in Michigan, US. Our focus this year was 'Outcomes and Measures' and importantly we discussed how we could ensure that the needs of individuals with Parkinson’s are reflected in the new technological measures that are being developed. Currently, clinical trials place emphasis on traditional and generic measurement scales such as the UPDRS (United Parkinson's Disease Rating Scale). These scales, although relevant, only provide a snapshot of a person's well-being at any particular time but they fail to capture the full picture of someone's Parkinson's and how it affects them individually and day by day. This results in a less than accurate treatment of their condition. It also impacts significantly on the accuracy and relevance of how the results of Parkinson's trials are assessed. 

As a starting point for this work, Parkinson's Movement conducted a survey of 500 people which looked at the huge range of Parkinson's related symptoms and side-effects to understand which of these have the most impact on people's lives and well-being. These findings are being used as the foundations to develop new ways to measure Parkinson's. By combining new technology with clinical expertise and patient experiences, we are aiming to create a more personalised and complete picture of the well-being of a person living with Parkinson's.

We are keen to progress further discussions surrounding the results of this survey - please (click here to download the 2015 survey results). If you would like to respond or add further comment to this ongoing project, please contact Suzanne. 

This year’s Rallying meeting included talks, panel discussions and presentations from people with Parkinson’s, advocates, and representatives from the following organisations:
Anupam Pathak Ph.D., Google; Max Little, Ph.D., Parkinson’s Voice InitiativeBas Bloem M.D.Ph.D.— ParkinsonsNet; Peter Schmidt, Ph.D. Chief information officer, vice president of research programs, National Parkinson Foundation; Dr Jon Stamford of Parkinson’s Movement; Tom Isaacs Co-founder and President of The Cure Parkinson’s Trust; Ken Kubota Director of Data Science for Research Programs, Michael J. Fox Foundation for Parkinson’s Research and Eli Pollard, Executive director, World Parkinson Coalition among others.

Parkinson's Movement advocate Ryan Tripp attended the Rallying meeting and wrote the following blog.

Rallying to the Challenge 2014

In late 2014, a group of Parkinson's advocates met at the Van Andel Research Institute (VARI) in Grand Rapids, Michigan, with a single goal - to try to change the way clinical trials in Parkinson's are run. The group focused on issues that contribute to the low participation rates for Parkinson’s trials which place roadblocks in the development and clinical testing of new treatments. The group drew on experiences and expertise provided by clinicians, patient organisations and other stakeholders to ensure that what was produced would be relevant, simple to use and would provide a positive and forward-looking resource, to enhance the relationship between participants and those running the trial. The meeting resulted in the Parkinson’s Clinical Trials Charter.

The charter has already been embraced and implemented by a major multicentre trial in the UK starting shortly. This will provide clear evidence of the charter's contextual usefulness and serve as a stepping stone to its wider selection and adoption.