Research
“Smart” Studies:
Digital Health
Tools Help
Understand
the Daily
Parkinson’s
Experience
by MAGGIE KUHL
PPMI participant Hyam Kramer (left) plans to keep wearing his
Verily Study Watch on his next adventure with his husband, Tom.
FOR MANY, THE EXPERIENCE OF
Parkinson’s varies from day to day, hour to
hour. That heterogeneity challenges research,
where study visits often happen once a month
or at longer intervals.
using a research app, and in partnership with
PPMI, Verily Life Sciences is giving 850 U.S.
participants a Verily Study Watch.
Hyam Kramer, 58, lives in Boston and was
diagnosed with Parkinson’s three years ago and
enrolled in PPMI soon after. At a recent study
visit, he joined the Verily Study Watch portion
of PPMI.
Now, smartphones and smartwatches are
allowing scientists to capture data on
movement, mood and other aspects of the
disease more frequently through passive
monitoring and short tests. Researchers are
exploring how to utilize these tools, and
Parkinson’s is a good test case.
“For the most part, I’m unaware that I’m
participating. It’s just along for the ride,” he
says of the watch.
Hyam’s mother had Parkinson’s, too.
Some results are already coming in. An MJFF-
funded study from Johns Hopkins University
developed a Parkinson’s severity score derived
from smartphone assessments. Such a score
could help direct treatment decisions and test
the impact of new therapies in clinical trials.
“I wish we had the technology to stop her
decline. I feel that she’s urging me on to do this,
to take advantage of opportunities that weren’t
available while she was alive,” Hyam says.
“There’s an enormous amount of effort to find
ways to slow or halt progression. I want to be
part of that.”
Our landmark Parkinson’s Progression Markers
Initiative (PPMI) study is outfitting more
than 1,000 participants with devices to collect
information on daily life with Parkinson’s and
grow the value of the clinical, biological and
imaging data volunteers give through in-person
study visits. Through a collaboration with
Roche, 200 volunteers at European sites are
The Verily Study Watch partnership with PPMI
is one way he’s making a difference.
“Why not?” he says. “It can piggy back on your
life; it’s unobtrusive. And it may help me and
help others.”
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The Fox Focus