Research
Foundation Releases
Parkinson’s Clinical
Trial Companion
Educational Resource
(continued from cover)
Clinical trials — the vital, final
step before Parkinson’s therapies
reach pharmacy shelves — provide
a tremendous opportunity for
the PD community to play a part
in the search for a cure. And the
Foundation is committed to
connecting participants with the
clinical studies that urgently need
them. As Michael J. Fox once
famously commented, “Cures
aren’t going to fall from the sky. We
have to climb up and get them.”
With more potential treatments
moving from the laboratory
toward patient hands than ever
before, many avenues are open for
people with Parkinson’s disease
and their loved ones to help carry
new therapies over the finish
line. People living with PD who
participate in research say it yields
unique and substantial benefits,
allowing them to take an active
role in their care and partner with
experts at the forefront of the
Parkinson’s field.
testimonials from care partners, a
clinician-researcher and a genetic
counselor. Separate resources for
scientific teams conducting clinical
trials also are included in the suite.
Dan Kinel, a research participant
percent never get off the ground
due to a lack of participants.
The Parkinson’s Clinical
Trial Companion is the latest
Foundation initiative to help
speed breakthroughs by
making trials more accessible.
The increase in resources
like these over the last few
years is a testament to the PD
community’s commitment to
advancing research, and it speaks
to the efforts of physicians and
scientists to help overcome the
challenges of study participation
(Learn more on page 8.)
Yet patients and families often
aren’t aware of or informed
about opportunities to get
involved, and research teams
running clinical studies face many
hurdles recruiting and retaining
volunteers. MJFF’s Fox Trial Finder
(foxtrialfinder.org) is an
online tool that matches willing
volunteers with traditional
“brick-and-mortar” trials based
on eligibility and geography. To
date, more than 70,000 people
worldwide have registered to help
further scientific progress.
As a result, across all research, 85
percent of trials face delays and 30 And in October 2017, the
Foundation launched Fox Insight
2
The Fox Focus
(foxinsight.org), an online
observational study that collects
patient-reported outcomes, or
PROs, to better understand the
lived experience of Parkinson’s
at every stage. More than 18,500
people with and without PD have
signed up as of this newsletter’s
printing. (Read more from our
CEO about how this data, paired
with genetics, can yield new
insights on the opposite page.)
However people with PD and
their loved ones choose to
participate, their contributions
are invaluable to realizing a world
without the disease.
“Being part of the research
in some way is key, whether
it’s an observational study, an
intervention, filling out some form,
however you’re comfortable,”
says Susan Bressman, MD, Mirken
Chair and professor of neurology
at Mount Sinai in New York City.
“All research is good.”