Analyzing the Parkinson's disease clinical trial pipeline to facilitate patient collaboration in research.
(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.
ABOUT: This dashboard is a place for PD advocates to find projects they can engage in to help move research forward. The PD advocate community is more connected, informed and mobilized than ever, providing a great opportunity to work together on important research-related initiatives. These initiatives include collaborating with research teams on trial design, increasing awareness of recruiting trials, influencing clinical trial policies and best practices and many more. The dashboard can feature these types of initiatives and create projects around them. Each project would be a formal undertaking with specific goals, deliverables, and timelines, with project teams made up of PD advocates who volunteer for specific roles or tasks, such as project coordinator, communications/outreach, information gathering and analysis, trial document input & review, conference participation, etc. Work would be largely doable from home via computer, email, phone, Skype, etc.
startup ongoing complete
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).
startup ongoing complete
Goal: Increase awareness of trials that are
recruiting 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.
Method: Create 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.
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.
PD Advocate Project Dashboard
patients informing research