- Fox Insight online digital platform facilitates partnership between patients and researchers to accelerate improved Parkinson's treatments and care
- Collaboration with 23andMe marries genetic and lived experience data to assemble holistic picture of Parkinson's disease
- Data to be made available to researchers worldwide starting in 2018
NEW YORK and MOUNTAIN VIEW, Calif., Oct. 30, 2017 /PRNewswire-USNewswire/ -- The Michael J. Fox Foundation for Parkinson's Research (MJFF) and 23andMe announced a collaboration to build a large, diverse cohort of both patients and control volunteers who have consented to participate in research. This cohort will provide researchers, drug makers, regulators and payers critical insight into the lived experience, genetics and variability of Parkinson's disease. The study, Fox Insight (foxinsight.org), is open to anyone 18 or older worldwide with or without Parkinson's disease and aims to recruit tens or even hundreds of thousands of patients to contribute data.
"Fox Insight amplifies the
patient voice in research and enables high-impact scientific collaboration
toward patient-relevant outcomes," says Todd
Sherer, PhD, CEO of MJFF. "Our expanded partnership with
23andMe holds potential to illuminate new pathways to treatment breakthroughs
by coupling genetic insights with the power of patient-reported phenotypic
data."
Direct-from-patient Data Driving Discovery
Increasingly, Parkinson's patients seek to be active contributors to improved disease understanding and the search for new therapies. To that end, Fox Insight facilitates patient sharing of information about the lived experience of Parkinson's.
Increasingly, Parkinson's patients seek to be active contributors to improved disease understanding and the search for new therapies. To that end, Fox Insight facilitates patient sharing of information about the lived experience of Parkinson's.
The study complements
traditional clinical research with scale and accessibility, supplementing
in-person studies with cohort size and rigorous patient perspective data
gathered over time. Fox Insight's flexible design enables integration of
diverse data collection modalities — such as remote biological sample
collections — and the online nature of the study allows a broader population of
patients, who may face geographic, mobility or transportation challenges, to
contribute data.
Starting in 2018,
data from Fox Insight will be de-identified and made accessible to qualified PD
scientists in real time, for independent studies. The aim is to increase
understanding of the variability and progression of PD, expand understanding of
disease and influence research drug development and healthcare priorities.
Access to the Fox Insight dataset can shorten research timelines, accelerate
"go/no-go" decisions and advance new therapies faster.
"What I find
really fascinating when I talk to Parkinson's patients is that we all have a different
disease," says Michael J. Fox,
who launched the Foundation in 2000 with a vision of bringing Parkinson's
patients and scientists into a true two-way dialogue to speed patient-relevant
research outcomes. "One of our Foundation's most important goals has been
finding a way to incorporate patient involvement and patient knowledge and
wisdom and enthusiasm in research. Capturing the natural back-and-forth between
patients really helps doctors and researchers."
The Fox Insight
study is sponsored by The Michael J. Fox Foundation and funded through
Foundation investments of $6 million to
date. Leadership philanthropic support for Fox Insight has been furnished by Connie and Steven Ballmer.
Collaboration with 23andMe Integrates Genetic and Lived
Experience Data
Through a collaboration between MJFF and personal genetics company 23andMe, Fox Insight participants diagnosed with Parkinson's also may choose to contribute genetic data to research by completing a 23andMe genetic test at no cost. This will open new opportunities for researchers to correlate clinical features of PD with underlying, individual genetic biology for better drug design toward precision medicine.
Through a collaboration between MJFF and personal genetics company 23andMe, Fox Insight participants diagnosed with Parkinson's also may choose to contribute genetic data to research by completing a 23andMe genetic test at no cost. This will open new opportunities for researchers to correlate clinical features of PD with underlying, individual genetic biology for better drug design toward precision medicine.
"Joining
forces with The Michael J. Fox Foundation will help our research goals of
understanding, treating and preventing this disease," said Anne Wojcicki, 23andMe CEO and
co-founder. "Making the data available to the wider research
community will accelerate our understanding of Parkinson's disease."
MJFF and 23andMe
share a commitment to building large networks of patients and researchers to
work together toward deeper understanding of Parkinson's and new PD treatments.
From 2009 to 2017, 23andMe's PD Research Community (who may now choose to
participate in Fox Insight) enrolled 12,000 patients who contributed genetic
and phenotypic data for disease study. 23andMe continues to generate a deep
well of knowledge surrounding the genetics behind PD and an infrastructure to
mine data for genetic discovery.
Fox Insight study
participants who are new to 23andMe will receive the full 23andMe service,
including the option to access genetic health risk reports containing
information on genetic variants that are associated with risk for Parkinson's
and other conditions.
Genetic
discoveries over the past two decades have revolutionized Parkinson's drug
development by illuminating new pathological pathways that drug developers are
targeting with therapies to slow or stop disease. Combining Fox Insight's
datasets of genetic and phenotypic data will lead to more complete knowledge of
the disease through better understanding of the underlying disease process,
potential therapeutic targets, and how symptoms and disease course may differ
depending on whether a genetic mutation is present.
Patient privacy is
a top Fox Insight priority. All contributed data is de-identified and kept on a
secure server to maximize protection of individual-level data. Individuals who
access their Parkinson's genetic health risk report are eligible for
complimentary genetic counseling on PD-associated genes included in that
report.
Fox Insight's
genetic data collection is funded by The Michael J. Fox Foundation with a grant
of more than $4 million to
23andMe, which includes the costs of making the 23andMe service available to
participants at no cost, as well as storing and maintaining the data.
For more
information on how The Michael J. Fox Foundation and 23andMe are collaborating
to speed Parkinson's genetic research, visit michaeljfox.org or 23andme.com/PD.
About The Michael J. Fox Foundation for Parkinson's Research
As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding more than $750 million in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson's research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders; increases the flow of participants into Parkinson's disease clinical trials with its online tool, Fox Trial Finder; promotes Parkinson's awareness through high-profile advocacy, events and outreach; and coordinates the grassroots involvement of thousands of Team Fox members around the world.
As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding more than $750 million in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson's research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders; increases the flow of participants into Parkinson's disease clinical trials with its online tool, Fox Trial Finder; promotes Parkinson's awareness through high-profile advocacy, events and outreach; and coordinates the grassroots involvement of thousands of Team Fox members around the world.
About 23andMe
23andMe, Inc. is the leading consumer genetics and research company. Founded in 2006, the mission of the company is to help people access, understand and benefit from the human genome. The company was named by MIT Technology Review to its "50 Smartest Companies, 2017" list, and named one of Fast Company's "25 Brands That Matter Now, 2017." 23andMe has millions of customers worldwide, with ~ 85 percent of customers consented to participate in research. 23andMe, Inc. is located in Mountain View, CA. More information is available at www.23andMe.com.
23andMe, Inc. is the leading consumer genetics and research company. Founded in 2006, the mission of the company is to help people access, understand and benefit from the human genome. The company was named by MIT Technology Review to its "50 Smartest Companies, 2017" list, and named one of Fast Company's "25 Brands That Matter Now, 2017." 23andMe has millions of customers worldwide, with ~ 85 percent of customers consented to participate in research. 23andMe, Inc. is located in Mountain View, CA. More information is available at www.23andMe.com.
SOURCE The Michael J. Fox Foundation
https://www.prnewswire.com/news-releases/michael-j-fox-foundation-and-23andme-announce-collaboration-to-capture-parkinsons-experience-at-scale-and-amplify-patient-voice-in-research-and-care-300545227.html
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