Research
We All Have a
Different Disease
(continued from cover)
HOW IT WORKS
Fox Insight is designed to flexibly
serve up research opportunities in
a range of forms including simple
Q&A surveys, integration of
wearable technologies, genetic
studies and objective measures
of disease (such as keyboard
tapping or voice recognition).
By taking part, participants are
contributing to a body of data
(collectively known as patient-
reported outcomes, or PROs)
that Fox Insight compiles, de-
identifies and makes available to
qualified Parkinson’s researchers
worldwide in real time for
independent studies.
“Patients are true experts on
Parkinson’s disease,” says Todd
Sherer, PhD, chief executive
officer of The Michael J. Fox
Foundation (MJFF). “PROs
amplify the patient voice in
research by enabling scientists to
study symptom frequency and
variability, rate of progression,
medication response and other
aspects of life with disease that are
challenging to capture through
individual interactions between
patients and their doctors.”
Scientists can correlate this
patient-contributed data with
the cellular/molecular profile of
the disease, he adds, helping to
Enrolling and participating in
Fox Insight take place online at
foxinsight.org. Once enrolled,
volunteers receive email prompts
to return to the Fox Insight
website for quarterly online
“study visits.”
illuminate poorly understood
or unknown aspects of PD and
open new avenues of research to
better address patients’ unmet
medical needs.
“Historically we’ve had
specialists telling us how to
live with Parkinson’s disease.
But the information was only
flowing in one direction,” says
MJFF Patient Council member
Carey Christensen of Stanwood,
Washington, diagnosed with
PD in 1999 at 41. “For a long
time, there didn’t seem to be any
good way for researchers to ask
the patient what was our actual
experience.”
PATIENTS POWERING
PROGRESS
“What I find really fascinating
when I talk to Parkinson’s
patients is that we all have a
different disease,” Michael
says. “A million of us, we have a
million different versions of it.
We have difficulty with things
that someone else may not deal
with at all. Gastrointestinal stuff,
issues with sleeping. Capturing
this natural back-and-forth
between patients really helps
doctors and researchers.”
2
The Fox Focus
Fox Insight volunteers also may
consent to link their Fox Insight
data to specific sub-studies,
which may be designed and
carried out in partnership with
the Foundation or independently
run, allowing research teams
worldwide to add a PRO
component to their trials.
The Fox Insight Genetic Sub-
study, a collaboration between
MJFF and 23andMe, is one such
sub-study. It is a groundbreaking
opportunity to drive Parkinson’s
genetic research toward
practical, patient-relevant
outcomes. Qualified Fox Insight
participants who have PD
and enroll in the Fox Insight
Genetic Sub-study will receive
a 23andMe Health and Ancestry
kit. Completing the kit provides
the opportunity for researchers
to pair de-identified genetic
information with ongoing
Fox Insight contributions,
expanding the value of each
dataset by correlating molecular
and genetic information with
patients’ own characterization of
the disease.
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