Recruiting Trial Awareness

​​​Goal: Increase awareness of recruiting PD

trials by providing neurologists with

trial info to share with interested patients.

Rationale: Relationship of trust between patient and physician.  Physician knows patient medical history and lived experience with PD.  Can counsel patient on trial selection based on patient preferences and medical history.  View Recruiting Trials to see # trials recruiting. 

Method: Create print & online informational material to help neurologists identify relevant trials.  Connect with Int'l Parkinson & Movement Disorder Society, AAN, EAN and other professional groups at meetings/conferences to share project info.​​​

Observational Study​​

Registration

​

​​​​WHAT happens to the data you submit for observational studies involving surveys, questionnaires, biological samples, smartphone tracking, etc.?  WHO will be able to access and analyze it?  WHEN will the study be completed and when will the results be available?  HOW will you be able to access the results? 

Project Goal:  Establishment of a policy to make this information available upfront for all observational studies.   

Rationale:  This information is not always available for observational studies people are considering.  They are more likely to participate if they know the information they provide will be used in a study and that they will have access to study results.

​Method:  Advocate for observational study sponsors to voluntarily register their studies on ClinicalTrials.gov. This would help promote observational study awareness, recruitment, and publication of results. (Registration of most interventional studies is already required by regulators and by the Intl' Committee of Medical Journal Editors for results publication).  

Study Publications 

​​Goal: Encourage publication of results

for all completed PD trials to help

advance science and acknowledge

participant contribution.

Rationale: August 2018 article in Movement Disorders,

The 10‐year Landscape of United States‐Registered Parkinson Disease Clinical Trials: 2007–2016 found that "About 40% of completed PD trials are unpublished, reflecting suboptimal utilization of participant efforts."

Method: Team of advocates to monitor trials that have recently been completed or terminated to ensure publication results are forthcoming and to followup with trial teams as necessary.   Visualization tools, such as 

hel

can help monitor trial completion dates.

More info to follow.

​​​ABOUT the Dashboard

WHAT:  a place for PD advocates to find projects they can engage in with other advocates to help move research forward.   

WHY:  The PD advocate community is more connected, informed and mobilized than ever, providing a great opportunity to work together on important research-related initiatives.

HOW:  Projects initiated and led by advocates.  Projects have concrete goals, specific tasks, measurable impact, flexible time commitment, doable from home (computer, phone). Possible initiatives: patient-researcher collaborations on trial design, efforts to increase awareness of recruiting trials, patient position papers/viewpoints on various topics (e.g., trial compensation), monitoring results publication for completed studies, etc.

PROJECT FORMAT:Each project will be a formal undertaking with specific goals, deliverables, and timelines, with project teams made up of PD advocateswho volunteer for specific roles or tasks, such as project coordinator, communications/outreach, information gathering and analysis, document input & review, conference participation, etc. 

WHEN:Dashboard being prototyped.  Launch expected 2nd half of 2019.  Email inputs and suggestions to: PDTrialTracker@outlook.com.

startup ongoing complete

​Trial Planning

& Design 

​​​​​

​Goal: Include greater patient involvement

in clinical trial planning and design.  

Rationale: Patient voice in trial design can help fine-tune trial parameters to minimize participant risk,

increase participation, and keep focus on patient priorities.

Method: Connect with sponsors/collaborators of planned trials to propose patient participation in design of their trials.  Can draw on lessons learned from the experience-to-date of patients involved in trial design.

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

​startup ongoing complete

startup ongoing complete

​​PDTrialTracker.info

PD Advocate Project Dashboard

patients informing research

(in development)

Additional Projects

(to be determined by

the PD advocate community)

For example, projects could be drawn from topics discussed on the Parkinson's Research Interest Group (PRIG) Facebook group, ScienceofParkinsons.com, tmrwedition.com, FoxFeed Blog Research News and other forums.  A sample project might be a position paper written by PD advocates on the topic of compensation for clinical trial participants.