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

As researchers, you are responsible for designing and delivering ethical studies that are of relevance to patients; you aim to ensure participants’ safety and to protect their rights and dignity.

Pre-Trial

As researchers you should strive to:

  • Communicate effectively with all participants and wider stakeholders which will involve:
    • Identifying individuals to be responsible for communication.
    • Producing information about the trial which is accessible and easy to understand.
    • Providing ample opportunity to address participants’ concerns or questions about the study.
    • Involving patient advocates and prospective participants in all aspects of study design and conduct as appropriate.
  • Be transparent and clear in what we hope to achieve from the study, its potential, the risks and benefits.
  • Ensure all appropriate approvals and safeguards are in place prior to the start of the study.

During Trial

  • Listen carefully to participants’ concerns and address unforeseen issues rapidly as they arise.
  • Employ and continuously re-evaluate the practices used in this trial, to ensure the optimum care of participants.
  • Communicate effectively and keep trial participants informed, motivated and supported.
  • Use data collected during the trial to re-assess the design and validity of the study and its potential value in future research.

Post Trial

  • Create a project debrief for all participants using a range of media and collect feedback from patients on their trial experience (good and bad).
  • Disseminate lessons learnt to the wider Parkinson’s community – best practice should evolve.
  • Communicate the results of the trial to the Parkinson’s and wider communities – if possible publish results as open access.
  • Use information collected from above to improve future trials.

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)