A Technological
Revolution in Research
In the 21st century, innovations in technology are
accelerating the pace of Parkinson’s research. People with
Parkinson’s disease (PD) and researchers alike benefit
from these new tools. For people with PD, it is now easier
to find and participate in clinical trials, and to track their
experiences with the disease. And with new means of
analyzing data, researchers are working to create a more
complete picture of PD than was possible in the past.
Clinical Studies Go Online
Widespread use of the internet has
opened new ways for people with
Parkinson’s to participate in clinical
research. Some studies are now carried
out mainly or entirely online. That makes
participation easier for many people who
might not otherwise: those who live far
from academic medical centers where
much research takes place, who have
difficulty traveling, who have not shared
their PD diagnosis with others, or who
simply don’t have much spare time.
For example, MJFF’s online study, Fox
Insight (foxinsight.org) gathers data
directly from people with PD about
their experience living with the disease.
Every 90 days, participants log on from
wherever is convenient to tell researchers
about their symptoms, medications
and other aspects of life with PD. When
analyzed as a collective dataset, this
information can give scientists insights
that could lead to better understandings
of disease and new treatments.
In addition to widening the scope and
diversity of people who can get involved,
computer access has made it simpler to
get started. Resources such as MJFF’s
Fox Trial Finder (foxtrialfinder.org), an
online clinical trial matching tool, make
it easier for volunteers to connect with
the studies that need them, including
those they can do from home. Facebook
and other social media platforms also
have become a source of information on
clinical trials. supplement their understanding of
potential interventions, and to find
better ways to adjust medications and
monitor disease progression. Technology
also is bringing researchers to patients.
Telemedicine — electronic methods of
real-time interactive communication, such
as two-way video — enables investigators
to talk to and evaluate participants in their
own homes.
Mobile Technology Puts
Research in Patients’ Hands Data Drives Discovery
During a typical office visit, a physician
spends five to 10 minutes examining a
patient with Parkinson’s. It’s essential
to PD care but, given the variability of
symptoms an individual may experience
day to day and even throughout the same
day, it’s only a snapshot of a person’s PD.
With smartphones, apps and wearable
devices such as fitness monitors,
people with PD now can record how
they live with the disease 24/7 — their
symptoms, medication effects and
activity levels. Researchers are using
this technology in stand-alone trials
and within traditional clinical trials to
Online studies and wearable devices have
enabled the collection of large amounts of
data from thousands of people, both with
and without PD, over long periods. These
substantial datasets can demonstrate
patterns to uncover Parkinson’s-specific
insights — information that was never
previously available to researchers. This
holds enormous promise in the pursuit of
a cure.
Learn more about MJFF