Research
Taking Part in Clinical Trials: New Guide Shares the Who, How and Why
Photo by Chris Sanders
Kae and Steven Spencer of San Martin, California
As part of the multimedia Parkinson’ s Clinical Trial Companion featured in our cover story, the Trial Participant Pack offers people with Parkinson’ s and their loved ones answers to critical questions about taking part in studies. The new resource includes a downloadable, easy-to-read guide and videos featuring people living with PD, their care partners and research experts.
To get just one new therapy from the initial“ Aha!” moment in the laboratory into the hands of people with Parkinson’ s disease can take several decades, billions of dollars, and thousands of volunteers, researchers and doctors. Clinical trials are the final piece of this puzzle and an opportunity for people with and without PD to volunteer to accelerate vital new treatments, and even cures, for PD.
PARTNERS IN RESEARCH Two trial participants featured are Kae and Steven Spencer, who have been married for more than 40 years— 13 of which have been dedicated to speeding a cure for Parkinson’ s. Since Steven received his Parkinson’ s diagnosis over a decade ago, he and Kae have taken part in research opportunities ranging from testing a new medication to answering online surveys. Kae’ s trial participation as a“ control,” a person without PD who serves as a comparison, gives her new hope that their joint efforts will bear fruit for future generations.“ I can’ t make his PD go away,” she says,“ but maybe I can help find a cure. If not for him, then for people down the line.” And Steven notes that while participating in research helps him feel more in control of his PD, seeing Kae taking part as well makes him even more empowered.“ We are in it together,” he says.
Downloadable book features testimonials of people with PD, including Karen Jaffe, MD
Funding for the Parkinson’ s Clinical Trial Companion was provided by 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 while preserving MJFF’ s track record of efficiency in stewarding donor-raised contributions for maximum impact on Parkinson’ s drug development.
Explore these complimentary resources, download the book and watch the videos( including one with Kae and Steven) at michaeljfox. org / participantpack.
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