THE FOX FOCUS...
ON RESEARCH
by claire meunier
I
SAM OGDEN
“
think it’s really simple. If we don’t do
it, it can’t get done. If people with
Parkinson’s disease don’t step up, they
can’t go from pre-clinical models to a
cure,” says Bob Harmon on why he
participates in clinical research.
Harmon, a Florida resident diagnosed in
2006, volunteers for traditional, in-person
studies and says he sees the need for that
approach, but he’s also embraced the new
wave of technology-enabled virtual studies.
“It’s very simple to do; it’s low impact,”
he says.
The Parkinson’s disease (PD)
community, eager for opportunities to
advance research by leveraging the latest
technology, has keenly welcomed Fox
Insight, MJFF’s virtual clinical study
launched in March. The study is designed
so that patients report symptoms
online, building a data set to enhance
understanding of the lived experience of
Parkinson’s. Researchers aim to identify
2 THE FOX FOCUS
patterns or changes in disease over time
and among subtypes of PD (e.g., genetic,
young-onset) to drive research priorities
and design. It will also compare data to a
control group without PD.
In its first few months, nearly 3,000
individuals — both with and without PD
— have enrolled and have completed a
total of 3,732 study visits collectively.
Data collected through Fox Insight is
de-identified and will be made available to
the research community starting in early
2016. Study leaders say Fox Insight data
will help identify unmet needs rated most
critical by people with PD. To date,
participants have indicated their most
bothersome symptoms to be fatigue,
stiffness, erectile dysfunction and
reduced libido.
“Patients are the experts on their
disease,” says MJFF CEO, Todd Sherer,
PhD. “Fox Insight is a platform for them to
share that expertise and to help shape our
areas of research focus. Too often study
priorities begin with the scientists’
interests. Our ‘patient-centered research’
approach means that patients are not just
the end recipient of new treatments but
our partners in the conception of these
studies.”
Interested volunteers can enroll at
foxinsight.org where they will complete
a “virtual study visit,” consisting of four
online questionnaires, on a quarterly basis.
New features and surveys build on this
core data to enhance the comprehensive
view researchers have of the lived PD
experience.
In May, Fox Insight launched the first
of these additions: “Fox Insight Wear.”
continued on page 9›
THE SHERER
REPORT
A NOTE FROM OUR CEO
“The road to a cure is not
a straight line.”
Our Foundation exists to pursue a single,
exclusive goal: accelerating a cure for
Parkinson’s disease (PD). But the road to
a cure is not a straight line. It is lined with
way stations, unexpected detours and
countless make-or-break moments.
One example is the leap from laboratory
testing to clinical trials in humans. Though
thousands of drugs are tested at the lab
bench, only a tiny percentage prove safe
and effective enough to warrant testing in
people. Advancing to clinical trials is a true
research milestone.
The Michael J. Fox Foundation (MJFF)
pushes promising drugs toward that
threshold by investing in the most
promising early-stage treatments. We seek
out studies with great scientific rationale
but in need of resources to test that
rationale.
It’s a high-risk, h