Afterword: Where Do We
Go from Here?
Reflections from a Repeat
Research Volunteer
By Gary Rafaloff
I was diagnosed with Parkinson’s disease (PD) in 2012.
Like most people, I was left reeling with uncertainty and
confusion. Probably a little different from most people, my
wife and I signed up for our first clinical trial that same day.
(Granted, I have a professional background in research and
statistics, so I may have been more comfortable than most
with the ins and outs of joining a study.)
But as it turns out, that first trial was just the
beginning of a new role in my life: repeat research
volunteer. I’ve participated in more than 20 scientific
projects so far. I’ve worn a smartwatch to monitor
my movements, undergone genetic testing, even
received infusions of a potentially neuroprotective
therapy three times a week (I later learned I had
been in the placebo group).
You’d think a relentless volunteer like me would
know everything there is to know about taking part
in research. Still, the guide you’re holding was so
informative that I have wanted to read it more than
once. Each time I pick it up, I find myself focusing on
different aspects and experiencing new emotions.
I’m energized by the hundreds of research trials
taking place today. (Believe me, this is a significant
increase even from just five years ago in Parkinson’s
research.) I’m intrigued by the scientific advances
in understanding the causes of the disease and its
relationship to genetic and cellular pathways. And
the stories of the Foundation’s Patient Council and
vocal research advocates motivate me and keep me
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wanting to do more, as much as I can, for as long as
I can.
I will never stop feeling astounded at the sheer length
of time it takes — literally decades — for researchers
and regulators to discover, test and approve new
treatments for brain diseases. Science has always been
a long march, but it’s not lost on me, or on any of the
patients I’ve met, that trials simply need more people
with Parkinson’s to participate. (It’s hard to wrap my
mind around the fact that 85 percent of clinical trials
are delayed or never even get off the ground, simply
because nobody shows up to take part.)
But strangely enough, this also makes me feel
hopeful. After all, you and I are living through a
moment of immense opportunity. Parkinson’s
disease is a diagnosis you wouldn’t wish on anyone.
But if I have to have it, I’m grateful it’s at a time when
I can play a personal role in bringing groundbreaking
new treatments to market.
Today there are interventional trials testing
therapies to ease some of the most troublesome
PD symptoms, and therapies to slow or stop
Navigating Clinical Trials: A Guide for Parkinson’s Patients and Families