Analyzing the Parkinson's disease clinical trial pipeline to facilitate patient collaboration in research.

PDTrialTracker.info



The World Parkinson CoalitionĀ® is a unique organization filling a niche in the global Parkinson's community by bringing the full spectrum of community members together both in person at our triennial World Parkinson Congresses and virtually at our WPC Scientific Updates.  Learn more at www.worldpdcoalition.org

By highlighting promising areas of research and where they are in the pipeline, the PDTrialTracker tool can help foster further collaboration between patients and researchers to accelerate the path to a cure. Insights gained through analysis of the pipeline can lead to development of action plans to help set research priorities, address roadblocks, increase awareness of recruitment and funding needs, improve the participant trial experience, and more. 

Research COLLABORATION

Suggestions for improving access to PD trial data in order to help facilitate trial awareness, recruitment, and research efforts:

  1. adoption of a trial naming convention within the research/media/patient community that includes a trial's ClinicalTrials.gov trial ID # (NCT # - NCT followed by 8 digits) in all trial-related communications (clinic websites, recruiting efforts, media articles, etc.) (benefits: patients and the general public can easily access key trial information directly on ClinicalTrials.gov, easier to identify trial being referenced, easier to follow trial progress)
  2. trial teams to submit information for all PD studies (both interventional and observational), as well as RESULTS of completed studies, to ClinicalTrials.gov, whether submission is required or not. (benefits: free and open access to trial data, pipeline transparency, recruitment, collaboration, elimination of duplicate efforts, awareness of study outcomes amongst participants and community at large)
  3. trial teams to provide active trial listings on their medical center website when possible, even if it is only a listing of trial NCT numbers. (benefits: trial recruitment, trial awareness, aids collaboration, provides transparency into the pipeline)




compiled by PD advocates Sue Buff and Gary Rafaloff

Project goal

The goal of this project is to enable the PD patient/family community to more easily identify funding, staffing, and recruiting needs for disease-modifying therapies in the pipeline (therapies to slow, halt or reverse progression). The document provides the current status of all ongoing FDA approved clinical drug trials for Parkinson's disease neuroprotective/interventional treatments, as well as plans for upcoming clinical trials. It includes links for access to more extensive information about the studies.

Background and motivation
There are currently no approved neuroprotective/interventional drug treatments for Parkinson's disease which have been shown to slow, halt or reverse progression. However, there are over 30 clinical trials which are now active or in the planning stage.  This review is for the benefit of patients who are trying to follow current research developments and who are trying to make decisions with regard to trial participation.  We've tried to be as comprehensive as possible and provide all of the basic information needed prior to contacting a trial coordinator for more detailed information and a consent form. We would appreciate any information available on the listed trials as well as those we may have missed.