Patient and care partner education and engagement leads to better health outcomes through specialist care, use of new treatments and increased participation in clinical research. The Parkinson's Disease Education Consortium (PDEC) is an alliance of biotechnology and pharmaceutical firms that supports The Michael J. Fox Foundation's commitment to providing high-quality education resources for the Parkinson's community while directing MJFF donor dollars toward research.
Current Parkinson's Disease Education Consortium Members
While the generous support of our consortium members makes our educational programs possible, their donations do not influence MJFF content, perspective or panelist selection.
Key Deliverables and Results
MJFF connects with our audience through an array of offerings:
Annual Education Campaigns
Bridging the Communication Gap (2019)
MJFF engaged in a study to understand the patient and care partner language of Parkinson’s. The study demonstrated that people with Parkinson’s frequently use metaphors to describe symptoms, women are more likely to experience autonomic symptoms and pain than men, and standard medical questionnaires can miss up to 50 percent of the symptoms most bothersome to people with Parkinson’s.
The study could create tools for researchers and health care providers that may enable more productive conversations — thereby improving care and advancing science.
View papers that explain the results in detail:
- The Most Bothersome Aspects of Off Periods Reported by Individuals with Parkinson's Disease
- Understanding the Lexicon of Fatigue in Parkinson's Disease
Parkinson's Clinical Trial Companion (2018)
As part of our ongoing efforts to increase the flow of participants into clinical studies that urgently need them, MJFF developed a suite designed to support patients and trial teams:
- The Trial Participant Pack aims to demystify research participation for people with Parkinson's and their loved ones through authoritative and easy-to-follow information, voices of those conducting and participating in Parkinson's research, and appealing tools to get started in research.
- The Trial Resource Pack toolkit packages best practices in engagement for clinical study teams, from recruitment through study's end, including templates and step-by-step plans to help you through the often daunting process of enrollment.
Parkinson's 360 (2017)
This candid and relatable toolkit for anyone whose life has been touched by Parkinson's includes a guidebook, short films featuring people with Parkinson's, an animated video explaining the basics of the disease and tools for living well with Parkinson's.
Ongoing Education Efforts
The Parkinson's Disease Education Consortium also supports high-quality communications distributed to patients and physicians throughout the year:
- MJFF website content: MJFF website content focused on understanding Parkinson's and navigating one's journey with disease.
- "Ask the MD" blog and video series: Our on-staff movement disorder specialist discusses popular Parkinson's topics.
- Third Thursdays webinars: Monthly interactive online events with patient, clinician and researcher panelists discussing and answering questions on a Parkinson's care or research topic.
- Podcasts: One or more experts delve into a Parkinson's research question or issue.
PDEC members are appreciated by the Foundation's robust, engaged audience:
- 1 million social media followers to date
- 425,000+ email subscribers to date
- 335,000+ monthly website visits
- 100,000 annual views of our “Ask the MD” video series
- 22,000 annual attendees to our monthly interactive webinars
We provide multiple levels of sponsorship opportunities to join the Parkinson’s Disease Education Consortium. Email firstname.lastname@example.org to learn more about the consortium and collaboration benefits.