The Clinical Trials Charter aims to set a standard of practice for those involved in clinical trials for Parkinson’s.

As a potential volunteer for a clinical trial in Parkinson’s, you have a choice whether to be involved in a trial or not. In taking the decision to volunteer for a particular trial you are forming a partnership with the organisers of the trial. The Clinical Trials Charter is a guide to best practice around your commitment within that partnership.

Pre-trial

  • Read all available information about the trial so that you fully understand what will be involved.
  • Understand any potential risks and benefits of your involvement in this trial as explained to you by the trial coordinators.
  • Discuss the pros and cons of the trial with people whose opinion you value before deciding whether or not to volunteer.
  • Carefully read through the ‘Informed Consent’ form and keep a signed copy.
  • Choose to participate only when you are satisfied that the purpose of this study is important to you, and when you have established what it involves and what you might expect.
  • Commit to taking part in the trial until its completion whilst being aware that you can withdraw if I choose.

During a trial

  • Talk to the research team:
    • if you have questions or concerns.
    • if you experience changes to symptoms or side effects.
    • if there is an emergency.
    • about your appointment or any visits to the trial centre.
  • Be aware of what experiences might occur and know to whom and how to report them if they happen.

Post-trial

It will help future studies if you communicate with the trial team to:

  • Share your opinion of the trial and the quality of care at the trial centre.
  • Speak openly about how the trial affected me positively or negatively.
  • Make suggestions on how the trial might have been improved.
  • Consider becoming a ‘Clinical Trials Ambassador’.

The Clinical Trials Charter has been developed by people with Parkinson’s and clinicians with particular thanks to Dr. Camille Carroll (Plymouth University, UK), Parkinson’s UK, European Parkinson’s Disease Association, Cure Parkinson’s, The National Parkinson Foundation (Miami, US), Prof. Michael Schwarzschild (Harvard and Parkinson Study Group, US), Van Andel Research Institute (Grand Rapids, US), Prof. Bastiaan Bloem (Parkinson Centre, Nijmegen, Netherlands), Dr. Michael Okun (University of Florida, US), Dr. Joseph Jankovic (Baylor College of Medicine, Houston, US), Prof. Tom Foltynie and Prof. Huw Morris (University College London, UK), Prof. Roger Barker (Brain Repair Centre, Cambridge, UK)