Research
engaged, and to participate
in research.”
TAKE PART IN RESEARCH
THAT MATTERS TO YOU
Over time, people enrolled in
Fox Insight can expand their
contributions to science by
participating in additional
research offered through the
platform, ranging from one-
time surveys to longer-term
sub-studies. These allow the
PD community to translate
their knowledge to research
while helping scientists speed
disease understanding.
“Fox Insight has an engaged
cohort primed to participate
in research,” says Stephanie
Christopher, program director,
Medical Device Innovation
Consortium, who deployed a
survey in Fox Insight last year to
better understand what matters
to patients in medical device
development. “The speed and
flexibility of data collection
allowed us to collect an
incredible number of responses
from a wide variety of PD
patients in record time.”
During the fall and winter,
Fox Insight will introduce two
new sub-studies. One will ask
people with PD to describe
real-world terms they use to
talk about different aspects
“Together we will
beat this disease…”
by ALLISON BOILES
of the disease, which could
potentially help facilitate better
communication in doctor’s
appointments. (For example,
what physicians call “motor
fluctuations” may be labeled
differently by patients.) Another
sub-study will investigate effects
of stress on PD symptoms and
evaluate the role of mindfulness
(focusing on one’s thoughts,
feelings and experiences in the
moment) in stress reduction.
Throughout 2019, Fox Insight
will announce additional surveys
and sub-studies that will allow
participants to inform research
and drive progress.
Carol
Whitlatch
celebrating
the holidays
with her
brothers
“The irony is not lost on me,” says Carol
Whitlatch, 57, of Shaker Heights, Ohio. “I’m
a researcher, turned study subject.” Carol, a
research scientist at Cleveland's Benjamin Rose
Institute on Aging, spent decades studying the
experiences of families caring for loved ones with
dementia. When her brother was diagnosed with
Parkinson’s disease in 2008, Carol jumped in as a
caregiver — a role she had researched for years
but never expected to take on. with foot dystonia, or toe curling, and shrinking
While caring for her brother, Carol began
to recognize that she, too, was experiencing
symptoms of Parkinson's. After several months own first step. “Together we will beat this disease
handwriting, Carol was diagnosed in December 2016.
After her diagnosis, but months before she came
out of what she calls “the Parkinson’s closet,” Carol
enrolled in Fox Insight — her first step to get involved
in Parkinson’s research. From her career experience
enrolling families in clinical studies, Carol knows
how precious direct-from-patient data can be for
researchers and she encourages others to take their
more quickly than if we work separately,” says Carol.
“And I want to be part of that.”
5
Fall/Winter 2018