The Michael J. Fox Foundation Annual Report 2018 Impact + Innovation | Page 25

2018 Annual Report
Engaging the
Experts
One of The Michael J. Fox
Foundation’s (MJFF) most impactful
contributions to research progress
is building an infrastructure
that meets the needs of a rapidly
progressing scientific field. Because
of the variability of Parkinson’s,
scientists must partner with the
true experts on Parkinson’s — the
patients who contribute data essential
to understanding the disease and
helping find better treatments.
MJFF connects the researcher and patient
communities to build diverse Parkinson’s disease
cohorts. We invested in a game-changing, large-
throughout the day. In late 2018, Roche's smartphone
app was deployed to PPMI participants in Europe
to passively collect movement information. The
de-identified data that is collected will be combined
with clinical assessments and biosamples collected
from volunteers, to create a rich treasure trove of
information for researchers. In fact, to date, PPMI
data has been downloaded more than 3.5 million
times, to be used by researchers for analysis and
studies. And the robustness of PPMI now puts us on
a path toward the next critical step in Parkinson’s
research: early detection and prevention.
MJFF’s latest iteration of engaging the patient-expert
in research leverages technology to meet participants
where they are and gather data from a generalizable
population of tens of thousands. Fox Insight, our
online study (foxinsight.org), is capturing patient-
reported outcomes and genetic data (through a
partnership with 23andMe) to learn more about the
disease and accelerate research breakthroughs.
scale longitudinal study, the Parkinson’s Progression Our work in assembling varied individuals from
Markers Initiative (PPMI), before others were the Parkinson’s community gives brain disease
willing to take on such a challenge. Now the most researchers invaluable resources with which to push
robust data set and specimen library in Parkinson’s toward scientific breakthroughs, make difficult
research — with access open to the broad scientific investment decisions and advance new treatments
community — PPMI has become an unparalleled toward patients. MJFF’s role as a key collaborator
resource for researchers and drug developers. In in the large ecosystem of brain disease research
2018, we launched a digital health collaboration with advances our belief that all of us need to work
Verily Life Sciences LLC and Alphabet company. together to cure Parkinson’s disease — by leveraging
Hundreds of volunteers in PPMI received a Verily expertise and dedicating human and financial
Study watch that collects data on movement and resources so the collective can move toward our
measures physiological and environmental conditions shared goal of a world without Parkinson’s.
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