A Guide for Parkinson's Patients and Families
Clinical trials are a final and crucial step on the path to better Parkinson's disease (PD) treatments and a cure. Studies also are essential to developing ways to diagnose and even predict the disease. People with Parkinson's and their loved ones who participate in research say it allows them to take an active role in their care, advance science for themselves and future generations, and partner with PD experts at the forefront of the field.
But thinking about research can bring many questions: Does every trial test a new medication, how do you find a study, who can volunteer and how?
Here, you'll find answers to those questions and more through a comprehensive, easy-to-read guide and videos featuring people with Parkinson's and their loved ones.
These materials complement a comprehensive set of resources The Michael J. Fox Foundation designed to help researchers and trial sites optimize and accelerate clinical trials. See the resources for researchers and trial sites here.
Volunteering for Trials: What Patients and Researchers Say
Introduction to Clinical Research in PD
While clinical trials vary, the need for participants both with and without Parkinson's is constant and critical to moving research forward.
Karen and Marc Jaffe and Steven and Kae Spencer talk about their experiences in research as couples, individuals with Parkinson's and control volunteers. Susan Bressman, MD, discusses how valuable every contribution is toward better understanding of Parkinson's and new treatments.
The Diversity of Parkinson's Clinical Research
As life with Parkinson's unfolds, options for research participation evolve with it. Hundreds of ongoing Parkinson's studies match diverse comfort levels and disease experiences.
Dan Kinel, Manny Torrijos and others give insights into volunteering for varied research studies at different points in their lives with Parkinson's.
Be Part of the Genetics Revolution in Parkinson's Research
Genetic research is one of the best routes to overcoming knowledge gaps and finding new therapies, including one to slow or stop PD progression.
Patti Meese and Ofer Nemirovsky live with Parkinson's and carry genetic mutations associated with the disease. Hear how knowing their genetic status shaped decisions to seek studies that need them. Jenny Verbrugge, a certified genetic counselor, discusses how genetic counselors can help you navigate genetic testing and explain your results.
Six Facts about Clinical Research Participation
Whether you are a first-time volunteer or repeat participant, these fundamentals can help guide you as you consider research opportunities.
Patients Are Key Research Partners
There Is a Study (or Several) for You
Not Every Study Tests a Drug
Participation Brings Risks and Benefits
Your Safety Is Top Priority
There Are Many Ways to Find Trials and Studies
The Answer Inside Us: Parkinson's Genetics
More on Research Participation: Who, Why, How
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Funding for the Parkinson's Clinical Trial Companion was provided by steering committee members of MJFF's 2017 Parkinson's Disease Education Consortium. This alliance of biotechnology and pharmaceutical firms support the Foundation's commitment to furnishing high-quality educational resources for the Parkinson's community with corporate sponsorship that allows MJFF to create and distribute materials such as the Parkinson's Clinical Trial Companion suite while preserving its track record of efficiency in stewarding donor-raised contributions for maximum impact on Parkinson's drug development. While MJFF's educational offerings are made possible by the generous support of our Disease Education Consortium, content and perspective are solely our own.