The Fox Focus Spring/Summer 2018 | Page 8

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 .
8
The Fox Focus