Rallying 2014: Survey results

taking part in clinical trials - Parkinsons MovementThis survey was carried out to try to understand more about the 'barriers' that hinder trials from succeeding.
For those involved in conducting clinical trials the following top five reasons or ‘barriers’ were:
• Funding (66%)
• Administrative support (46%)
• Recruitment of people with Parkinson’s (PwPs) (44%)
• Practical support from other organisations involved in the trial (36%)
• Time taken for institutional contracting (32%)

Over a quarter of those involved also reported the importance of the subject matter of the trial, and problems associated with accurate measurement of results.
People with Parkinson’s were asked the reasons why they might not engage/participate in clinical trials and the top five reasons were given as:
• Potential of adverse consequences/side effects (58%)
• Disruption of medication regime (53%)
• Possibility of being on placebo (39%)
• Upheaval to life (38%)
• Not being informed of the progress and results of the trial (34%)

Over 25% of respondents also reported other important reasons such as:
• Possibility of not being able to reclaim all the costs incurred through participation
• Being excluded from future trials
• Lack of access to understandable information about what the trial involves

You can read about the survey in more detail in an article published in the Journal of Parkinson’s Disease.


  • 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…
  • 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…
  • 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,…
  • 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…
  • 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…