Editor&#8217;s note: This post first appeared in the Michael J. Fox Foundation <a href="https://www.michaeljfox.org/news/behind-scenes-largest-dataset-parkinsons-patient-reported-outcomes">blog</a>. We&#8217;re reposting it here to highlight the work we are doing with the MJFF and Fox Insight.
 People with Parkinson’s can experience variable symptoms over the course of the disease, have different responses to treatment, and often progress at distinct rates. <img loading="lazy" decoding="async" src="https://blog-api.23andme.com/wp-content/uploads/2017/10/Fox-Insight-e1509055580622-300x93.jpg" alt="" class="alignright size-medium wp-image-25820" width="300" height="93" srcset="https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2017/10/Fox-Insight-e1509055580622-300x93.jpg 300w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2017/10/Fox-Insight-e1509055580622-768x239.jpg 768w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2017/10/Fox-Insight-e1509055580622-1024x319.jpg 1024w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2017/10/Fox-Insight-e1509055580622-880x274.jpg 880w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2017/10/Fox-Insight-e1509055580622-1180x367.jpg 1180w" sizes="auto, (max-width: 300px) 100vw, 300px" />
Traditional in-person clinical studies don’t include a diverse range of patients, limiting our understanding of the disease. 
A new paper published today in <a href="https://www.nature.com/articles/s41597-020-0401-2">Scientific Data</a>, a journal from Nature Research, explains how The Michael J. Fox Foundation (MJFF) and 23andMe are tackling this gap in understanding. 

<h6>Data Available for Researchers</h6>
The paper outlines the data being collected through Fox Insight, an online longitudinal study of people with and without Parkinson’s disease sponsored by MJFF. It’s the largest study of patient-reported outcomes in Parkinson’s, with more than 44,000 current participants and plans to recruit thousands more. Interested volunteers can learn more on the <a href="https://foxinsight.michaeljfox.org/">foxinsight.org</a>. De-identified data from Fox Insight is available to qualified researchers through the <a href="https://foxden.michaeljfox.org/insight/explore/insight.jsp">Fox DEN platform</a>.
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“In this new data descriptor paper, we explain what is available, how it was collected, and from whom,” said <a href="https://www.prnewswire.com/news-releases/the-michael-j-fox-foundation-launches-2020-fox-trot-5k-runwalk-series-across-the-united-states-to-raise-1-2m-for-parkinsons-disease-research-301009899.html">Luba Smolensky</a>, MJFF’s Director of Research Data and Analytics and the lead author of the study. “The patient-reported outcomes in this dataset are critical to the advancement of new Parkinson’s therapies, and we want the research community to understand and use this important resource.”
<h6>Types of Data</h6>
Fox Insight integrates three types of data: 
<ul>
<li>demographics and patient-reported outcomes from validated instruments assessed at routine intervals, </li>
<li>information from one-time surveys on Parkinson’s-related issues such as economic burden and use of complementary therapies</li>
<li>genetic data collected through collaboration with 23andMe. </li>
</ul>
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Both the content and timing of questionnaires are dependent on participant self-reported diagnosis. Fox Insight was also designed to support adjustments to multi-modal data collection as Parkinson’s research evolves. 
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23andMe researchers see the potential that this rich collection of data offers to better understand the factors that influence Parkinson’s disease progression among different patients, and, in turn, drive insight into new disease-modifying therapies.  
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“The data offers new opportunities to gain important insights into Parkinson’s disease,” said 23andMe’s Parkinson’s disease program manager, Paul Cannon, Ph.D. “Because MJFF is making this data available to other qualified researchers through the Fox Den platform, it enables the research community  to accelerate the pace of this important research and better understand the unique patient experience, and that is at the core of our mission.”
The goal of Fox Insight is to provide Parkinson’s researchers with a rich dataset combining patient experiences with genetic risks and modifiers that can be used for discovery, validation, and reproducibility. Qualified researchers are invited to explore and analyze the data through the study’s data platform, <a href="https://foxden.michaeljfox.org.">Fox DEN</a>.

Behind-the-Scenes of the Largest Dataset of Parkinson’s Patient-Reported Outcomes 

New Parkinson&#8217;s disease research by scientists at 23andMe has identified more than 100 phenotypic variables related to the disease, offering a potential step forward in efforts to diagnose Parkinson&#8217;s disease earlier.
<div id="attachment_24396" style="width: 260px" class="wp-caption alignright"><img loading="lazy" decoding="async" aria-describedby="caption-attachment-24396" src="https://blog-api.23andme.com/wp-content/uploads/2016/10/KarlHeilbron-preferred-199x300.jpg" alt="" class="wp-image-24396" width="250" height="376" srcset="https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2016/10/KarlHeilbron-preferred-199x300.jpg 199w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2016/10/KarlHeilbron-preferred-768x1156.jpg 768w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2016/10/KarlHeilbron-preferred-680x1024.jpg 680w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2016/10/KarlHeilbron-preferred-585x880.jpg 585w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2016/10/KarlHeilbron-preferred-784x1180.jpg 784w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2016/10/KarlHeilbron-preferred-scaled.jpg 1701w" sizes="auto, (max-width: 250px) 100vw, 250px" />Karl Heilbron, Ph.D.</div>
&nbsp;
Published today in the <a href="https://www.nature.com/npjparkd/">Nature Partners Journal/Parkinson’s Disease</a>, the new <a href="https://www.nature.com/articles/s41531-019-0077-5">paper</a> offers a wider glimpse of the phenotypes — traits, environmental exposures, and comorbidities — that are linked to Parkinson’s disease, such as migraines, obsessive-compulsive disorder, and seasonal allergies. This study was a collaborative effort with Alastair Noyce from the Preventive Neurology Unit, Queen Mary University of London and Mike Nalls from the National Institute on Aging and Data Tecnica International.
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“Understanding which conditions are associated with Parkinson disease — particularly those that often occur much earlier than the typical age of diagnosis — is a promising step forward for the Parkinson’s community,&#8221; said <a href="https://blog.23andme.com/23andme-research/update-23andme-parkinsons-disease-research/">Karl Heilbron</a>, Scientist I, Statistical Genetics, 23andMe. “Especially in terms of being able to identify those that might develop Parkinson’s much earlier, it’s possible to envision a future where we could intervene before the condition develops in the first place.”
<h6>Research Platform</h6>
This study is part of a broader effort by 23andMe over the last decade to use genetics to advance our collective <a href="https://blog.23andme.com/news/on-our-way-to-10000-23andme-welcomes-first-members-of-parkinsons-disease-community/">understanding of Parkinson’s Disease</a>. That effort has benefited from a long-standing collaboration with The Michael J. Fox Foundation (MJFF), most recently with the <a href="https://blog.23andme.com/research-communities/october-insights-into-parkinsons-research/">Fox Insight study</a>.
&nbsp;
“These novel associations provide insights into potential causes and contributing factors of Parkinson’s,” explains <a href="https://www.michaeljfox.org/foundation/leaders.html?subcatid=381">Brian Fiske</a>, PhD, Senior Vice President, Research Programs at MJFF. “This information may ultimately help researchers develop new diagnostic tools and treatments.”
&nbsp;
For this latest study, 23andMe researchers were able to leverage our unique research platform. The platform includes both phenotypic and genetic data from millions of customers — some with Parkinson’s and others without it — who have consented to participate in research.  
&nbsp;
<h6>Parkson&#8217;s Associations </h6>
The researchers included data from 13,196 people with Parkinson’s disease as well as data from 131,960 other individuals who do not have the disease. The study revealed that having Parkinson’s disease was associated with 122 phenotypes, 27 of those were previously known to be associated with the disease, and another 23 had a strong a priori link to a known association. 
&nbsp;
But importantly, the researchers discovered 42 associations that have not previously been reported. Furthermore, researchers found that migraines, obsessive-compulsive disorder, and seasonal allergies were associated with Parkinson’s disease. And these phenotypes tended to  occur decades before the typical age of diagnosis for Parkinson’s disease. 
&nbsp;
By better understanding what traits are “flags” for the disease, it may help lead to earlier diagnosis and eventually screening. While this doesn’t mean that just because you have migraines or seasonal allergies, you’ll develop PD. However, it does have the potential to improve risk prediction, as many currently available algorithms simply don’t have enough information. 
&nbsp;
To date, no disease-modifying drug trial for PD has succeeded. This may be because by the time an individual is diagnosed, they have already lost 30-50 percent of the neurons in the substantia nigra (the brain region linked to Parkinson’s disease motor symptoms), and it may be too late to intervene.
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<h6>Hope for Parkinson&#8217;s Disease Early Detection</h6>
But, with a better understanding of earlier disease associations, perhaps we could develop treatments that can help earlier on.
&nbsp;
“The results of this study could prove to be very valuable. The 23andMe data provide us with a unique opportunity to undertake a comprehensive survey of things that might be important to Parkinson’s disease and, in doing so, we find new associations and confirm the importance of previously recognised associations”, said Alastair Noyce, PhD, Clinical Senior Lecturer in the Preventive Neurology Unit at the Wolfson Institute of Preventive Medicine, Queen Mary University of London. “Some of these are features of established disease, but others occur much earlier in life and may prove crucial to the efforts aimed at defining groups at-risk of Parkinson’s disease, who may be eligible for neuroprotective drugs as these become available.”
&nbsp;
The phenotypes that currently comprise the Parkinson’s disease phenome have mostly been explored in relatively small purpose-built studies. Using a single large dataset, the research team has successfully reproduced many of these established associations and have extended the Parkinson’s disease phenome by discovering novel associations. 
&nbsp;
This work paves the way for studies of these associated phenotypes that explore shared molecular mechanisms with Parkinson’s disease, infer causal relationships, and improve our ability to identify individuals at high-risk of Parkinson’s disease.
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New Parkinson’s Disease Research May Offer Promise for Early Detection

23andMe’s commitment to Parkinson’s research is in the company’s DNA. It goes back almost a decade to when we first launched our<a href="https://www.23andme.com/pd/"> Parkinson’s research community</a>, and  for many of us this interest is more than just professional, it’s personal.
<img loading="lazy" decoding="async" src="https://blog-api.23andme.com/wp-content/uploads/2018/10/Run-DNA-Fox-Trot-300x225.jpg" alt="" class="alignright size-medium wp-image-26638" width="300" height="225" srcset="https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2018/10/Run-DNA-Fox-Trot-300x225.jpg 300w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2018/10/Run-DNA-Fox-Trot-768x576.jpg 768w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2018/10/Run-DNA-Fox-Trot-1024x768.jpg 1024w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2018/10/Run-DNA-Fox-Trot-880x660.jpg 880w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2018/10/Run-DNA-Fox-Trot-1180x885.jpg 1180w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2018/10/Run-DNA-Fox-Trot.jpg 2048w" sizes="auto, (max-width: 300px) 100vw, 300px" />
We have both friends and family members who are living with the disease. Last month our Parkinson’s research community manager, Paul Cannon,<a href="https://blog.23andme.com/research-communities/an-interview-with-23andmes-parkinsons-disease-program-manager-paul-cannon/"> shared his experience</a> of undergoing surgery for Deep Brain Stimulation for treatment of his Parkinson’s.
 Paul’s experience and others is what helps motivate the work and efforts like 23andMe’s recent sponsorship of fundraisers like the The Michael J. Fox Foundation’s (MJFF) Bay Area Fox Trot 5k to raise money and awareness for Parkinson&#8217;s research. This year our team — 23andMe Run DNA — of more than 100 employees and their family members raised about $12,000. 

This fun way of getting involved also highlights one of our strongest allies in our efforts in Parkinson’s disease, MJFF. One year ago, the Foundation launched a new Parkinson’s research initiative called<a href="http://foxinsight.org"> Fox Insight</a> in collaboration with 23andMe.
Fox Insight is an online clinical study that collects self-reported data about health experiences from those with and without Parkinson&#8217;s, and aims to transform the search for better treatments for the disease. 23andMe and The Michael J. Fox Foundation have joined forces to help eligible participants add their genetic data to this study, which can allow researchers to create a more holistic understanding of the disease. This folds neatly into 23andMe’s long-standing goals of better understanding, treating and preventing the disease.

In the last year, Fox Insight enrollment has more than quadrupled to over 27,000 people and counting, and we hope that thousands, even hundreds of thousands, more will participate.
To educate people about genetic research and how it could help us overcome knowledge and treatment gaps in Parkinson&#8217;s, MJFF created a new video to explain what genetics is teaching us about the disease. As movement disorder specialist and Michael J. Fox Foundation Scientific Advisor Dr. Susan Bressman puts it,
“Advances coming out of genetic research today offer one of our best chances to develop drugs that will help everyone living with Parkinson’s whether they have a (genetic) mutation (for the disease) or not.”
That’s because insights from genetic research can help scientists better understand how Parkinson’s develops, why it manifests itself differently in some people, and why some individuals who carry a genetic mutation associated with Parkinson’s never develop the disease. Studying both those with and without Parkinson’s illuminates these questions. Take a moment to check out the <a href="https://youtu.be/SwQojrAZV9M">video</a> and learn more about<a href="http://foxinsight.org"> Fox Insight</a>.

October Insights into Parkinson’s Research

At 23andMe, we are committed to accelerating and advancing Parkinson’s disease research. So when April comes around, employees make a point of honoring Parkinson’s Awareness Month.
As we’ve done in the past, this year, 23andMe employees organized a fundraiser and participated in a walk at the May 6th Moving Day event in San Francisco organized by The Parkinson’s Foundation.
<h6>A Special Day</h6>
This year’s fundraiser was extra special because it coincided with 23andMe’s 12th anniversary on April 27th! It included a bake sale, a silent auction, and probably the most fun event of all, an employee talent show in front of the entire company.
<div id="attachment_26183" style="width: 1034px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" aria-describedby="caption-attachment-26183" class="size-large wp-image-26183" src="https://blog-api.23andme.com/wp-content/uploads/2018/05/PD-Moving-Day-1024x768.jpg" alt="" width="1024" height="768" srcset="https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2018/05/PD-Moving-Day-1024x768.jpg 1024w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2018/05/PD-Moving-Day-300x225.jpg 300w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2018/05/PD-Moving-Day-768x576.jpg 768w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2018/05/PD-Moving-Day-880x660.jpg 880w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2018/05/PD-Moving-Day-1180x885.jpg 1180w" sizes="auto, (max-width: 1024px) 100vw, 1024px" />From left to right: Fah Sathirapongsasuti, Briana Cameron, Sarah Laskey, Olga Sazonova, Karl Heilbron, Rajan Patel, Cody Sam, Ksenia Kriksunov, Margaret Adams, and Liz Noblin.</div>
“How many adults get to participate in a talent show at work? Not many,” said Patricia Penton, a 23andMe employee and one of last year’s talent show performers. “And how many adults get to participate in a talent show at work to raise funds for Parkinson’s disease research? Probably just us. That’s pretty awesome.”
<h6>Raising Awareness and Raising Money</h6>
What’s even more awesome is that, together, 23andMe employees were able to raise money for Parkinson’s disease research. 23andMe has participated in the Moving Day event since 2016, and has raised close to $50,000 for this event since then.
23andMe’s commitment to Parkinson’s research goes back to some of our <a href="http://journals.plos.org/plosgenetics/article?id=10.1371/journal.pgen.1002141">earliest published work</a>, and our Parkinson’s disease community which has been a great partner in advancing this research. We will continue to build this community, which is focused on better understanding the role of genetics in this disease. Our goal is to improve diagnosis and treatment, and maybe even help find a cure for Parkinson’s disease.
<h6>Fox Insight</h6>
With that in mind, last fall, we <a href="https://blog.23andme.com/news/new-parkinsons-disease-research-collaboration-michael-j-fox-foundation/">expanded</a> our long-running partnership with The Michael J. Fox Foundation (MJFF) to join forces and extend MJFF’s online clinical study, <a href="https://foxinsight.michaeljfox.org/">Fox Insight</a>, to 23andMe customers with Parkinson’s disease.
Through Fox Insight, people with and without Parkinson’s are providing researchers with critical insights about the lived experience and variability of the disease, simply by answering health-related survey questions. More than 18,000 participants have already enrolled, but that’s just the beginning. The study aims to recruit tens of thousands more participants, because a large, diverse group has great potential to lead to a better understanding of Parkinson’s disease.
<div id="attachment_26189" style="width: 310px" class="wp-caption alignright"><img loading="lazy" decoding="async" aria-describedby="caption-attachment-26189" class="wp-image-26189 size-medium" src="https://blog-api.23andme.com/wp-content/uploads/2018/05/IMG_8133-300x200.jpg" alt="" width="300" height="200" srcset="https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2018/05/IMG_8133-300x200.jpg 300w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2018/05/IMG_8133-768x512.jpg 768w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2018/05/IMG_8133-1024x683.jpg 1024w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2018/05/IMG_8133-880x587.jpg 880w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2018/05/IMG_8133-1180x787.jpg 1180w" sizes="auto, (max-width: 300px) 100vw, 300px" />Multi-talents Thao Do and Aaron Petrakovitz show off their ballroom dancing moves.</div>
<div id="attachment_26188" style="width: 310px" class="wp-caption alignright"><img loading="lazy" decoding="async" aria-describedby="caption-attachment-26188" class="wp-image-26188 size-medium" src="https://blog-api.23andme.com/wp-content/uploads/2018/05/IMG_8094-300x200.jpg" alt="" width="300" height="200" srcset="https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2018/05/IMG_8094-300x200.jpg 300w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2018/05/IMG_8094-768x512.jpg 768w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2018/05/IMG_8094-1024x683.jpg 1024w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2018/05/IMG_8094-880x587.jpg 880w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2018/05/IMG_8094-1180x787.jpg 1180w" sizes="auto, (max-width: 300px) 100vw, 300px" />Sloshing around the gene pool were one of this year&#8217;s talent show acts the &#8220;Synchronized Scientists.&#8221;</div>
Eligible Fox Insight participants with Parkinson’s can help researchers gain a holistic picture of the disease by joining the Fox Insight Genetic Sub-study, powered by 23andMe. To sign up, individuals first need to join Fox Insight and complete some basic study steps. Eligible enrollees are then invited to participate in the sub-study. Through this sub-study, eligible participants can also receive genetic counseling at no cost.
23andMe customers with Parkinson’s disease are welcome to enroll in Fox Insight and share their genetic data through the Fox Insight Genetic Sub-study. Participants’ de-identified genetic data will be coupled with survey response data and made available to qualified researchers at 23andMe and other organizations to drive Parkinson’s disease research and development of new treatments. <a href="https://foxinsight.michaeljfox.org/">Learn more</a>.

Honoring Parkinson’s Awareness Month

This week The Michael J. Fox Foundation announced the launch of a new Parkinson&#8217;s research initiative called<img loading="lazy" decoding="async" src="https://blog-api.23andme.com/wp-content/uploads/2017/10/fi_logo.svg" alt="" class="aligncenter size-large wp-image-25818" width="1" height="1" /><img loading="lazy" decoding="async" src="https://blog-api.23andme.com/wp-content/uploads/2017/10/Fox-Insight-e1509055580622-300x93.jpg" alt="" class="alignright wp-image-25820 size-medium" width="300" height="93" srcset="https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2017/10/Fox-Insight-e1509055580622-300x93.jpg 300w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2017/10/Fox-Insight-e1509055580622-768x239.jpg 768w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2017/10/Fox-Insight-e1509055580622-1024x319.jpg 1024w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2017/10/Fox-Insight-e1509055580622-880x274.jpg 880w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2017/10/Fox-Insight-e1509055580622-1180x367.jpg 1180w" sizes="auto, (max-width: 300px) 100vw, 300px" />
As part of our broader collaboration with The Foundation, 23andMe is inviting participants of its more than 12,000 strong Parkinson’s Research community to join the <a href="https://www.statnews.com/2017/10/30/23andme-fox-parkinsons/">initiative</a>. While the two organizations have a long history of working together to study Parkinson’s disease, this new initiative will make data broadly available to researchers, drug makers, and regulators worldwide starting in 2018, with the goals of sparking innovation and discoveries around Parkinson’s disease.
The hope is to recruit tens or even hundreds of thousands of people with Parkinson’s to be involved in a collaborative and diverse cohort of patients that will add new kinds of information that could be used quickly accessed by qualified researchers. New technology and leveraging online tools allow for those with Parkinson’s to more easily contribute data, allowing researchers to pair it with genetic data that could ultimately accelerate discovery.

In addition, The Michael J. Fox Foundation and 23andMe are launching the Fox Insight Genetics substudy. This will give eligible Fox Insight participants with Parkinson’s an option to be genotyped by 23andMe at no cost, and contribute their deidentified genetic data to research.
For 23andMe, which pioneered the use of genetics with online tools and people-centered research, this offers a chance to build upon the success of its work on Parkinson’s disease and encourage innovation by qualified outside researchers.
&#8220;Joining forces with The Michael J. Fox Foundation will help our research goals of understanding, treating and preventing this disease,&#8221; said Anne Wojcicki, 23andMe CEO, and co-founder. &#8220;Making the data available to the wider research community will accelerate our understanding of Parkinson&#8217;s disease.”
The goal is to better understand Parkinson’s disease with the hope of finding new treatments. But the initiative is also a response to Parkinson’s patient&#8217;s desire to actively contribute to research and share their own experience, which isn’t always captured in traditional disease research.
“What I find 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 helps doctors and researchers.”
Starting next year de-identified data from Fox Insight will be made easily accessible to qualified Parkinson’s researchers, for independent study. This sort of access to the research could shorten research timelines, and speed the development of new therapies. 
Go <a href="http://foxinsight.org">here</a> for more information about Fox Insight.

New Parkinson’s Disease Research Collaboration with the Michael J. Fox Foundation

Participants in the 23andMe Parkinson’s disease research initiative have contributed a vast amount of data, that has enabled our researchers and <img loading="lazy" decoding="async" src="https://blog-api.23andme.com/wp-content/uploads/2015/06/Brain-Logo-287x300.jpg" alt="" class="alignright size-medium wp-image-22635" width="287" height="300" srcset="https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2015/06/Brain-Logo-287x300.jpg 287w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2015/06/Brain-Logo.jpg 438w" sizes="auto, (max-width: 287px) 100vw, 287px" />collaborators to improve our understanding of the genetics of Parkinson’s. But we want to do even more to maximize the use of this data. 
Through ongoing collaborations with The <a href="https://www.michaeljfox.org/">Michael J. Fox Foundation for Parkinson’s Research</a> (MJFF), 23andMe is working with the Parkinson&#8217;s disease community, piloting novel ways to collect and analyze data and advancing genetic research in Parkinson&#8217;s disease.
Part of that work entails supporting a postdoctoral researcher at 23andMe, Karl Heilbron, who is analyzing this extensive data set. We have previously reported on some of <a href="https://blog.23andme.com/23andme-research/parkinsons-research-community-update/">Karl’s work</a>. This summer he presented his findings related to novel traits associated with Parkinson’s disease at first ever Gordon Research Seminar dedicated to the disease. The <a href="https://blog-api.23andme.com/wp-content/uploads/2017/10/Karl.jpg">poster</a> was well received and we were happy when Karl was selected to give an oral presentation on his data.
23andMe also worked with MJFF to invite Parkinson’s researchers from around the world, to submit proposals for collaborations with 23andMe. We contacted more than 12,000 researchers and received a significant number of high quality and innovative proposals. Through an exhaustive review process, we have identified the top four proposals regarding technical feasibility and potential impact. We will feature details of these in upcoming blog posts. 
<div id="attachment_24396" style="width: 209px" class="wp-caption alignright"><img loading="lazy" decoding="async" aria-describedby="caption-attachment-24396" src="https://blog-api.23andme.com/wp-content/uploads/2016/10/KarlHeilbron-preferred-199x300.jpg" alt="" class="wp-image-24396 size-medium" width="199" height="300" srcset="https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2016/10/KarlHeilbron-preferred-199x300.jpg 199w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2016/10/KarlHeilbron-preferred-768x1156.jpg 768w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2016/10/KarlHeilbron-preferred-680x1024.jpg 680w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2016/10/KarlHeilbron-preferred-585x880.jpg 585w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2016/10/KarlHeilbron-preferred-784x1180.jpg 784w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2016/10/KarlHeilbron-preferred-scaled.jpg 1701w" sizes="auto, (max-width: 199px) 100vw, 199px" />Karl Heilbron</div>
<h5>New data projects</h5>
Off-label drug use survey
In medicine, doctors sometimes prescribe treatment for a condition with a drug that has already been FDA-approved to treat a different disease or symptom. This practice is called ‘off-label’ drug use, and there is little information on how common it is in the treatment of Parkinson’s disease. To find out, researchers here at 23andMe collaborated with MJFF and The Cure for Parkinson’s Trust to create a new off-label drug use survey to address this question.
Although off-label drug use is practiced in medicine, little is known about the safety and effectiveness of drugs in unapproved indications. The survey is not an endorsement of off-label drug use, but instead, an effort to learn more how common it is for the treatment of Parkinson’s. 23andMe encourages individuals with Parkinson’s to talk with their physicians regarding treatment decisions. 
As part of this effort, 23andMe sent an email to participants in the Parkinson’s Disease Research Initiative asking them to take the off-label drug surveys. Respondents were presented with a list of potential off-label medications; exenatide, isradipine, metformin, nicotine patch, nilotinib, and statins, many of which are currently or were recently in clinical trials for Parkinson’s, as well as an “other” free text option. Interpretation of the results is complicated by the fact that many of these drugs are approved for conditions that are also common in those with Parkinson’s, such as type-2 diabetes, high cholesterol, and high blood pressure. We found that 21 of the 1,325 participants (one to two percent), reported that they were prescribed isradipine off-label. None of the other drugs were prescribed off-label to more than a handful of participants if any at all. It’s important to note that we have no information regarding any benefits or side-effects relating to the off-label drugs, or even whether the individuals ever took or are still taking the drugs.&nbsp;&nbsp; &nbsp;
Medical records pilot
Online survey questions continue to be the core of our data collection methods. However, we are always interested in new and different sources of data to add to our research. 
With the recent proliferation of electronic medical record systems, we wanted to determine if these records could be a valuable new source of data for Parkinson’s research. In particular, we’re interested in discovering factors that influence the progression of the disease. A traditional approach to studying this would be to enroll people with Parkinson’s disease in a longitudinal study where they would be asked to complete baseline and periodic (e.g., every three months) follow-up surveys to assess changes in the progression of their Parkinson’s symptoms. 
Many individuals with Parkinson’s disease progress relatively slowly, especially in the early stages. This means that it can be a significant challenge to keep participants engaged in such studies for long enough to see substantial changes in their symptoms. We want to explore whether disease assessments in medical records would allow us to access the same information, but looking backward in time. 
To address this, we recruited approximately 200 participants with Parkinson’s disease who were willing to have us retrieve and analyze their medical records. These participants were assigned to one of two companies that specialize in the retrieving and anonymizing electronic medical records. The companies retrieved and anonymized the records, then mined them for information that we deemed points of interest. So what did we find? &nbsp;&nbsp; 
 &nbsp;&nbsp;
<ul>
<li> Almost all of the participants saw a specialist for management of their Parkinson’s.</li>
<li> The format and content of the medical records were highly variable, as was the number of visits per year.</li>
<li> The most consistently reported data was self-reported data, which can often be more easily recorded by online surveys.</li>
<li> Rating scales for Parkinson’s — the Unified Parkinson Disease Rating Scale (UPDRS) — were rarely and inconsistently included in the records, and, even when present the scores were variably reported. More frequently records had Hoehn and Yahr scores for Parkinson’s, but still insufficient to provide any data on progression. 
</li>
</ul>
In conclusion, the two vendors were able to retrieve records for most of the participants, but the data contained therein were too variable and inconsistent to be of any value for research, especially regarding progression.
Many thanks to all of the 23andMe Parkinson’s disease research initiative participants who contributed to the work!

Update on 23andMe Parkinson’s disease research

Last year 23andMe focused  on updating plans for how best to <img loading="lazy" decoding="async" class="alignright size-medium wp-image-25240" src="https://blog-api.23andme.com/wp-content/uploads/2017/04/Karl-and-Olga.001-300x234.jpg" alt="Karl and Olga.001" width="300" height="234" />use the data that we had already collected. A key element of this was adding Karl Heilbron to the 23andMe research team. 
Karl is  a postdoctoral researcher focused exclusively on Parkinson’s disease. 
Most recently he presented a poster at the annual meeting of the American Society of Human Genetics, describing some of the preliminary findings of his work to find new phenotypes associated with Parkinson’s.

Some of the important Parkinson’s projects launched last year include a pilot study on the feasibility of incorporating de-identified medical records into the data we use for research. Analysis of the records is ongoing, and we expect to finish the pilot project by later this year. 
We have also updated the background Parkinson’s survey completed by all research participants. 
This new survey includes a new section focused on L-dopa induced dyskinesia , a side effect of the drug levodopa that can emerge over time in many individuals with Parkinson’s. We are interested in factors — genetic and non-genetic — that influence susceptibility to the side effect. Olga Sazonova, a research scientist at 23andMe, leads this effort. Thanks to all of the Community members who contributed data related to Parkinson’s and other research topics during the year.<img loading="lazy" decoding="async" src="https://blog-api.23andme.com/wp-content/uploads/2017/04/Top-Ten-Parkinsons-Activities.001-300x223.jpg" alt="" class="alignright size-medium wp-image-25294" width="300" height="223" srcset="https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2017/04/Top-Ten-Parkinsons-Activities.001-300x223.jpg 300w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2017/04/Top-Ten-Parkinsons-Activities.001.jpg 602w" sizes="auto, (max-width: 300px) 100vw, 300px" />
Our goals for for this year, are to analyze our existing data not just in-house but also in collaboration with other Parkinson’s researchers. For example, together with The Michael J. Fox Foundation, 23andMe recently solicited proposals for new collaborative Parkinson’s research projects. Our goal is to find proposal with the most potential to break new ground in what we know about Parkinson’s and with the most potential to meaningfully affect the lives of those living with Parkinson’s. We plan to announce the selected proposals over the summer.


Together with our collaborators the Research Team has also been working on a number of projects related to the collection of new types data. We plan to roll these out during the next few months. Topics to be covered include:<img loading="lazy" decoding="async" src="https://blog-api.23andme.com/wp-content/uploads/2017/04/ASHG-Paper.001-1-300x225.jpg" alt="" class="alignright size-medium wp-image-25295" width="300" height="225" srcset="https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2017/04/ASHG-Paper.001-1-300x225.jpg 300w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2017/04/ASHG-Paper.001-1-768x576.jpg 768w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2017/04/ASHG-Paper.001-1-880x660.jpg 880w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2017/04/ASHG-Paper.001-1.jpg 1024w" sizes="auto, (max-width: 300px) 100vw, 300px" />

<ul>
<li style="font-weight: 400;">Off-label prescriptions: This is a common medical practice in which a doctor prescribes a drug for an indication different from those that it has been approved for.</li>
<li style="font-weight: 400;">Impulse Control Disorders: Collecting more data on impulse control disorders, which are potentially serious complication, often seen in individuals with Parkinson’s. We are interested in understanding how common it is in the 23andMe Parkinson’s research community and how the risk of developing the condition is influenced by genetics and other factors including medications.</li>
<li style="font-weight: 400;">Cognition: The aim of the cognition project is to use a suite of online cognition tools, developed by 23andMe, to understand how Parkinson’s affects cognition and the changes associated with disease progression.</li>
<li style="font-weight: 400;">Microbiome: The microbiome project will involve the collection and analysis of samples from volunteers with and without Parkinson’s disease to investigate whether Parkinson’s or its subtypes are associated with changes in the makeup of the microorganisms living in participants’ mouths and intestines. This is a hot topic in Parkinson’s research and an area where the 23andMe’s research community can make a significant contribution.</li>
</ul>
Finally, we are hopeful that <a href="https://blog.23andme.com/23andme-research/parkinsons-awareness-month-2/">a collaborative project </a>we are planning with the Michael J. Fox Foundation will to among other things, expand the number of individuals with Parkinson’s in the 23andMe database.

Parkinson’s Research Community Update

April is Parkinson’s Awareness Month and this year it also marks the eighth anniversary of 23andMe’s <a href="https://www.23andme.com/pd/">Parkinson’s Research Community</a>, <a href="https://www.23andme.com/pd/"> 
<img loading="lazy" decoding="async" class="alignright size-medium wp-image-22635" src="https://blog-api.23andme.com/wp-content/uploads/2015/06/Brain-Logo-287x300.jpg" alt="Brain Logo" width="287" height="300" srcset="https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2015/06/Brain-Logo-287x300.jpg 287w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2015/06/Brain-Logo.jpg 438w" sizes="auto, (max-width: 287px) 100vw, 287px" /></a>which introduced a game-changing model for science, one that leverages online tools and is powered by average, everyday people — people like you.


Parkinson’s Awareness Month also comes on the heels of an <a href="https://blog.23andme.com/news/good-news-health-reports/">FDA authorization</a> for 23andMe to offer several Genetic Health Risk Reports to customers, including one on genetic risk for Parkinson’s Disease. Genetics is one of many factors that influence a person’s chance for developing Parkinson’s disease. 23andMe’s new Parkinson’s Disease Genetic Health Risk Report looks at two of the most common variants associated with significantly higher risk for the disease LRRK2 G2019S, and GBA N370S. 


Putting this information into the hands of individuals is important for them personally, but it can do so much more. It can trigger the sort of engagement that powers important research as 23andMe has seen with the Parkinson’s Research Community, which now includes more than 11,000 people and is the world’s largest study cohort of genotyped individuals with Parkinson’s. 


The community has powered important research from the beginning, first helping to replicate known genetic associations for Parkinson’s and then leading researchers to find never before known associations. Beyond that work 23andMe has also joined in hugely important ongoing collaborations — with organizations like the <a href="https://www.michaeljfox.org/">Michael J. Fox Foundation</a> — which are helping lead to important insights and valuable data for future research. 
Right now 23andMe is working on a new research effort with The Michael J. Fox Foundation (MJFF), and we expect to announce more details about the program later this year. In the meantime, we strongly encourage people interested in supporting or participating in Parkinson’s research to learn more about the MJFF’s <a href="https://foxinsight.michaeljfox.org/">Fox Insight</a> program. 


For people with Parkinson’s or those who love them, the research done through the 23andMe Parkinson’s Research Community and its collaborators offers something else — a chance to make a difference. This is a true human desire. Not all of us have the resources or skills to do the science, but we all have the ability to offer what may be even more valuable, our interest and participation. As Thelma, the wife of one of our research participants, told us a few years ago, participating in research offered her a chance to make a difference.


“I have six grandchildren … and I don’t want (Parkinson’s) to befall them,” she said. “This is something I can do for them as well.”


Engaging people like Thelma is part of what 23andMe does well, but we offer something else too. 
Even individuals who do not have a specific condition, who are healthy and are not personally touched by some of the health conditions we study, can help by simply consenting to research. Having aggregated data from healthy individuals for which to compare is important for disease research. 
In addition, some individuals who remain healthy their whole lives, even though they have the variants that put them at a higher risk, could also offer researchers valuable information in their study of Parkinson’s and other neurodegenerative diseases. In fact, some scientists are starting to hypothesize that developing interventions before someone is symptomatic could be key to prevention or more effective treatment for some neurodegenerative diseases. 
One powerful way to study this hypothesis is to identify people with specific risk factors &#8211; like genetics &#8211; to focus on in future studies. 
The ability for people to participate in research and become engaged in this kind of work is game changing, said 23andMe co-founder and CEO Anne Wojcicki.

&#8220;What gets me up every day is the excitement of our potential for research and the opportunity to advance science and understanding of the underlying biology of conditions like Parkinson’s disease,&#8221; she said.  
<img loading="lazy" decoding="async" class="aligncenter size-large wp-image-22634" src="https://blog-api.23andme.com/wp-content/uploads/2015/06/Parkinsons-Research-Community-640x238.jpg" alt="Parkinson's Research Community" width="640" height="238" />

Parkinson’s Awareness Month

In his last fight– the one against Parkinson’s – Muhammad Ali went the distance finally succumbing in early June to complications from a respiratory problem.
He was 74.<img loading="lazy" decoding="async" class="alignright size-medium wp-image-24008" src="https://blog-api.23andme.com/wp-content/uploads/2016/06/Ali-300x168.png" alt="Ali" width="300" height="168" />
In the more than 30 years since Ali was first diagnosed, our understanding of Parkinson’s has changed enormously and yet there is still much we don’t understand. While many assume that it was Ali’s many years in the ring that caused his Parkinson’s, it’s likely much more complicated than that.
<a href="https://www.michaeljfox.org/foundation/leaders.html?communications#racheldolhun">Dr. Rachel Dolhun</a>, the vice president for medical communications with the Michael J. Fox Foundation, recently wrote about this.


“(H)ead trauma and traumatic brain injury are associated with an increased risk of Parkinson&#8217;s but the mechanisms for how they are connected are unclear and direct causation (head or brain injury actually causing Parkinson&#8217;s) has not been established,” Dolhun writes. “More work is necessary to fully understand this relationship.”
While head trauma has been linked to Parkinson’s, so too has exposure to chemicals and genetics.
“Genes load the gun” and some environmental exposure or head trauma, “pulls the trigger.”


What complicates the picture is also the nature of Parkinson’s itself. It may not be one disease, but many different conditions that fall under one diagnosis. This evolving understanding of the disease was noted in a recent article in <a href="http://www.theatlantic.com/health/archive/2016/06/ali-and-parkinsons/485798/">The Atlantic</a> by one of the magazine’s senior editors, Dr. James Hamblin. He notes that some neurologists have come to use the term<a href="https://www.ncbi.nlm.nih.gov/pubmed/27262147"> “Parkinson’s disease syndrome”</a> to describe the condition.
In the same way our understanding of what causes the disease has also come to include many different culprits – including head trauma.
While Hamblin focuses on just one genetic discovery by a team at Northwestern University, there have been many found over the years, including genetic variants that might mitigate the risk for the disease. Each finding has helped researchers deepen their understanding of the biological underpinnings of the disease, which in turn has helped to focus efforts looking at new treatments for the condition.


As<a href="https://blog.23andme.com/news/forever-grateful/"> we noted</a> in our blog earlier this month, Ali himself (along with his daughter Laila) supported research into the disease. With 23andMe the two helped produce <a href="https://www.youtube.com/watch?v=9B9cgyEeULU">a video</a> to encourage participation in Parkinson’s research. 23andMe now has the <a href="https://www.23andme.com/pd/">largest Parkinson&#8217;s community</a> for genetic research in the world. It’s allowed researchers to make important breakthroughs and uncover new genetic associations for the disease.


Find out more about our research into Parkinson’s <a href="https://www.23andme.com/pd/">here</a>.

Ali and Parkinson’s

There are many faces of Parkinson’s, Claudia’s just happens to be smiling most of the time.<img loading="lazy" decoding="async" class="alignright size-medium wp-image-23733" src="https://blog-api.23andme.com/wp-content/uploads/2016/03/PD-Infographic-Top-244x300.jpg" alt="PD Infographic Top" width="244" height="300" srcset="https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2016/03/PD-Infographic-Top-244x300.jpg 244w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2016/03/PD-Infographic-Top-768x946.jpg 768w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2016/03/PD-Infographic-Top-831x1024.jpg 831w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2016/03/PD-Infographic-Top-714x880.jpg 714w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2016/03/PD-Infographic-Top-958x1180.jpg 958w, https://blog.pub.us-west-2.prd.23andme.us/wp-content/uploads/2016/03/PD-Infographic-Top.jpg 1010w" sizes="auto, (max-width: 244px) 100vw, 244px" />
“I’m an optimistic person,” said the mother of two teenage boys who lives with her family in Illinois.


She’s also one of the 11,000 people with the disease that make up <a href="https://www.23andme.com/pd/">23andMe’s Parkinson’s Research Community</a> – individuals who participate in a new kind of crowd-sourced science.
To mark Parkinson’s Awareness Month, we’re highlighting Claudia’s story in part because of who she is, but also because of what motivated Claudia to join the community in the first place, and what keeps her engaged and optimistic about the future.
Most of us are not scientists or researchers, but we can play a role in our health by being engaged, educated about the disease, and willing to contribute to research.
As Claudia says:


“If I have the opportunity to do something right now, why wouldn’t I?”
It’s people like Claudia, who have helped 23andMe create the world’s largest cohort of genotyped Parkinson’s patients. This community has powered important research from the beginning, first helping to replicate known genetic associations for Parkinson’s and then helping researchers find never before seen associations.
23andMe’s Parkinson’s Research Community is unique because it enlists people as partners in research instead of looking at them as subjects. For those with Parkinson’s – some of whom live away from major centers of research or are physically unable to travel to those centers – 23andMe’s Research community has allowed them to easily contribute from the comfort of their own homes.
For Claudia her diagnosis in 2010 surprised her and left her frightened, and unsure.
“Parkinson’s disease entered in our home uninvited and it decided to stay, in me,” she said.


Like many who face a serious illness, Claudia wondered why this burden had been placed on her shoulders, but she quickly moved beyond that. She thought of her children and others with the disease, knowing that perhaps if she participated in research scientists might find something in her that could help others.


Take a moment and meet Claudia, one of the everyday heroes that make 23andMe’s research possible. 
<iframe loading="lazy" width="640" height="360" src="https://www.youtube.com/embed/-1gjNUzABAY" frameborder="0" allowfullscreen="allowfullscreen"></iframe>

Michael J. Fox Foundation