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.

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