Town Halls

Parkinson’s Movement: Clinical Trial Town Hall Session

June 2016 Atlanta;  July 2016 Saint Joseph University, West Hartford Connecticut; September 2016, Grand Rapids

What are Parkinson’s Clinical Trial Town Hall Sessions?

The “Clinical Trials Town Hall” sessions aim to increase the visibility and build awareness of Parkinson’s research and clinical trials that are taking place regionally.  Through pre-meeting questionnaires and discussion during the meetings, we focus on the factors that contribute to difficulties in participating in research and clinical trials.  Our findings are shared with local researchers in an effort address and overcome these issues.

Parkinson’s Clinical Trial Town Hall in Practice:

On 17th July 2016, we hosted a Town Hall workshop of 12 people living with Parkinson’s as part of the MADPA (Make a Difference Parkinson’s Alliance) 3rd Annual Symposium at Saint Joseph’s University in West Hartford.  In spite of a few technical issues which meant a key video presentation with Nobel prizewinning researcher Dr Greengaard, could not be shown, the meeting discussed the inhibiting factors affecting recruitment to clinical trials.

Workshop attendees reported that overall, once recruited into a clinical trial, their experiences were very positive. However, a number of reasons were given for not participating in clinical trials including a fear of invasive procedures and the number of visits required, the inclusion criteria, and that trials are called “trials” for a good reason: they are complicated and can be onerous.  Some reported that although they had tried to sign up for a trial and had left a message, the trial coordinator had not returned their call. Others queried reimbursement for expenses, which varies from study to study and is dependent on funding.

However there are also a number of barriers that prevent ease of recruitment for the research community. Dr David Simon, Beth Israel Medical Centre Boston reported that many institutions do not support research and this has an impact on staffing which means that sometimes there is no member of staff available to respond to respond to interested individuals.

The meeting suggested ways to overcome initial barriers and provide greater outreach:

Information about clinical trials should be posted in all neurologists’ offices, along with leaflets directing interested participants how to find out more – perhaps a video testimonial could help here. And trials should be highlighted at the monthly support meetings.

Outcomes:

As a result a quarter of the participants in the workshop enrolled in Studies.

The workshop revealed a need to measure the challenges being experienced by participants in and those running clinical trials regionally and compile a list of inhibitors and solutions that can be applied locally and compared nationally.

Town Hall Presenters:

  • Israel Robledo    – Lead Facilitator
  • David Simmons – MDS Hospital for Special Care
  • Chris Liong           – Columbia University Medical Center – Trial Coordinator
  • Steve DeWitte    – Coordinator

 

This meeting was generously supported by Acorda.

 

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