THE FOX FOCUS...
ON RESEARCH
PROPELLING RESEARCH INTO THE
21ST CENTURY continued from page 1 ›
Sage Bionetworks released Parkinson
mPower, a patient-centered, iPhone
app-based study of symptom variation in
Parkinson’s disease, available for download via the iTunes App Store. Sage and
MJFF are now collaborating on the further
development of mPower, and later this year
will jointly conduct a study of participants
contributing data through both mPower
and Fox Insight.
“Today the technology exists to study
and measure every aspect of Parkinson’s
disease — and not just in a few dozen or
hundred people, as has traditionally been
the case in Parkinson’s clinical trials, but in
hundreds or thousands. And not just once
or twice a year in a clinician’s office, but
24/7,” says Todd Sherer, PhD, chief
executive officer of MJFF. “For the first
time, we’ll have data to help answer
fundamental questions — like when in the
course of their disease people should start
taking levodopa in order to get the best
symptomatic benefit, or how to accurately
predict who will respond to certain
treatments, or why patients progress at
different rates.”
Changing the paradigm of clinical
data capture
Traditional clinical studies, the final, vital
stage of research before a new treatment
comes to market, are the most expensive
part of drug development, costing millions
or even billions of dollars. Clinical testing
also is slowed by a chronic lack of
volunteers in sufficient number. This can
cause the drug development process to stall
and some trials must be repeated or scaled
back. Even worse, potential new therapies
can be abandoned. These factors
individually and collectively lengthen the
time it takes for new treatments to come
to market.
4 THE FOX FOCUS
“Patients and families know that their
participation in research is a requirement
to speed progress toward cures,” says
Debi Brooks, MJFF co-founder. “MJFF is
working to build the on-ramps. Technologyenabled solutions, such as mobile apps and
virtual studies, cannot replace traditional
clinical trials. But they hold immense
potential to complement field-wide efforts,
in part by opening the door to many more
research volunteers.”
While cost and recruitment challenges
necessarily limit cohort sizes of traditional
trials, home computers and smart phones
can reduce the burden of participation for
thousands of individuals — collecting data
at relatively low cost. Computing solutions
for the analysis of large datasets also are
rapidly growing in sophistication.
This creates an entirely novel
opportunity to amplify the patient voice
in research by tying unmet medical needs
directly to outcome measures for drug
development. Individuals’ health can now
be tracked in detail using self-reported data
and mobile devices equipped with sensors
that continue to improve in their accuracy.
According to a recent report in
The Economist, currently about 2 billion
people around the world have access to
smartphone technology, and 80 percent
of adults will use an Internet-connected
mobile device by 2020.
Core to the MJFF philosophy, all data
collected through Fox Insight will be
de-identified and made available to
researchers worldwide for independent
studies. Making this data available to the
research community at large can rapidly
accelerate progress by reducing research
costs and promoting replicable results. As
always, stringent measures are in place to
protect participants’ privacy. Any data that
directly identifies a study participant is
removed before data is transferred to
researchers for analysis. Participants’
contact information will never be sold,
rented or leased.
mPower/Fox Insight 2015 Combined Study
Later in 2