- 7,200+ survey responses reveal effects of coronavirus infection and shelter-in-place guidelines on the Parkinson’s community
- Tremendous response over 30 days reflects capability of technology-enabled research and community’s commitment to rapidly shape scientific avenues
- Data is available now to qualified researchers worldwide through the Fox Data Exploration Network (foxden.michaeljfox.org)
NEW YORK, NEW YORK (July 14, 2020) — As part of its commitment to spearhead research on the most critical and pressing issues facing people with Parkinson’s and their families, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) today releases results from the first and largest self-reported data set detailing the lived experience of the coronavirus disease (COVID-19) pandemic on the Parkinson’s disease (PD) community.
Leading Parkinson’s scientists worked urgently to deploy a first-of-its-kind survey through the Foundation’s online clinical study, Fox Insight (foxinsight.org), to identify the effects of the global pandemic on Parkinson’s symptoms and disruptions in care. The survey, which remains open in Fox Insight, was designed in consultation with a group of nine people with PD and care partners who contributed to its content. From April 23 through May 23, the COVID-19 survey obtained 7,209 responses from people with or without PD (77 of whom reported a COVID-19 diagnosis).
“It’s remarkable how many people responded so quickly to tell us how they were impacted by the clinical and social aspects of this pandemic,” says Fox Insight principal investigator Carlie Tanner, MD, PhD, professor of neurology at the Weill Institute for Neurosciences, University of California, San Francisco. “This is why Fox Insight exists — to meet patients where they are and to use their experiences to transform our understanding of Parkinson’s disease.”
Data Uncovers Consequences of COVID-19 for People with Neurological Disease
The COVID-19 pandemic is exerting wide-ranging impact on the global population, but especially on individuals living with chronic neurological diseases, like Parkinson’s. PD is a highly variable disease with unique disease onset, symptoms and progression to each individual. Direct-from-patient data, collected at scale through Fox Insight’s COVID-19 survey, is critical to add to the growing body of evidence on the pandemic’s consequences.
In Fox Insight’s coronavirus survey, 51 people with Parkinson’s reported a COVID-19 diagnosis, making this study the largest group of people with PD and COVID-19 in research to date. The survey revealed that during a COVID-19 infection, 55 percent of people with PD reported worsening of an existing motor symptom (i.e., tremor, slowness, imbalance) and more than 50 percent reported worsening of non-motor symptoms (i.e., mood issues, digestive problems, pain and fatigue).
“Having COVID with Parkinson’s was unsettling, because doctors still don’t know much about how these two diseases interact,” said Dan Morris, a person with PD who had COVID-19 and completed the Fox Insight survey. “My tremor got worse with COVID and there was nothing to show if other people with PD were also experiencing this. I submitted my survey to Fox Insight because I wanted my experience to add up to something bigger.”
The survey also validated previously reported effects of the pandemic on people living with chronic disease, especially people of color. Of respondents, 62 percent reported canceled healthcare appointments, involuntary reductions in needed in-home care or difficulty obtaining medications. Non-white race and lower income were independently associated with difficulty obtaining PD medications. Furthermore, telemedicine appointments were reported by 39 percent of people with PD, but those with lower household income were less likely to attend appointments through telemedicine.
In addition, 35 percent of people with Parkinson’s had issues completing at least one essential daily activity such as getting food. Many respondents had to cancel exercise or social activities — cornerstones of PD care. Some used online classes to continue activities, but people with PD with lower income were less likely to report alternative ways of seeking care. These interruptions, coupled with the need to self-isolate, were associated with worsening of Parkinson’s symptoms.
Analysis of the data set, which is expected on bioRxiv this week, was limited to surveys completed between April 23 and May 23, 2020. The COVID-19 survey will be kept open in Fox Insight, however, to capture the evolving experiences of people with Parkinson’s as the coronavirus pandemic continues to evolve. Early respondents also will be re-surveyed in six to 12 months for longitudinal analysis, which will help clinicians better understand the long-term implications.
Learn more about study results from expert panelists in MJFF’s webinar on Thursday, July 16 from 1-2 p.m. ET. Register at michaeljfox.org/webinars.
Fox Insight: A Digital Powerhouse to Amplify Patient Voice in Parkinson’s Research
Sponsored by MJFF, the Fox Insight online clinical study was launched in 2017 to facilitate a partnership between patients and researchers to provide critical visibility into the lived experience, genetics and variability of PD. The online nature of the technology-enabled study allows a broader population of patients, including those who may face geographic, mobility or transportation challenges, to contribute data. Fox Insight has enrolled nearly 50,000 participants to date, making it the largest cohort of patient-reported outcomes in Parkinson’s research.
Participants complete online “study visits” every 90 days to report on real-world information regarding PD. Fox Insight participants also can offer additional information by filling out one-time or sub-study questionnaires. To date, Fox Insight has received more than 1.3 million total in survey responses, with more than 136,000 study visits completed and nearly 103,000 one-time survey or sub-study responses. And 76 percent of participants had not participated in a clinical study before Fox Insight, crystallizing its role as a stepping-stone for people to advance research.
Data from Fox Insight is de-identified to maximize privacy and protection of individual-level information and then made available through the Fox Insight Data Exploration Network, or Fox DEN. Qualified researchers can access COVID-19 data from Fox Insight by registering at foxden.michaeljfox.org.
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 $900 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.
For more information, visit us at michaeljfox.org.
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