Data from the Michael J. Fox Foundation’s Fox Insight study reveal a number of consequences as a result of the virus for those with chronic neurologic diseases.
Carlie Tanner, MD, PhD
The Michael J. Fox Foundation for Parkinson’s Research has released results from the first and largest self-reported dataset on the impact that the coronavirus 2019 pandemic has had on the Parkinson disease community, identifying a number of consequences as a result of the virus for those with chronic neurologic diseases.1
The Fox Insight dataset included 51 patients with Parkinson disease who had a COVID-19 diagnosis. During the infection, 55% of them reported a worsening of present motor symptoms, such as tremor, slowness, or balance issues, and more than half reported a worsening of nonmotor symptoms such as mood issues, gastrointestinal challenges, pain, and fatigue.
"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," said principal investigator Carlie Tanner, MD, PhD, professor of neurology at Weill Institute for Neurosciences at the University of California, San Francisco, in a statement. "This is why Fox Insight exists—to meet patients where they are and to use their experiences to transform our understanding of Parkinson disease."
The dataset was compiled via the Fox Insight online clinical study—a first-of-its-kind survey that was designed in consultation with 9 patients with Parkinson disease and their care partners. From April 23, 2020, to May 23, 2020, 7209 responses were gathered from those with and without Parkinson, of which 77 reported a diagnosis of COVID-19. Those who responded early to the survey also will be re-surveyed in 6 to 12 months for longitudinal analysisso to help better understand the long-term implications.
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Symptoms related to COVID-19 were generally similar between those with and without Parkinson disease, with those with Parkinson reporting pneumonia (n = 4; 7.8%), a need for supplemental oxygen (n = 6; 12%), hospitalization (n = 5; 9.8%), admission to ICU (n = 2; 3.9%), and being placed on a ventilator (n = 1; 1.9%). Comparatively, those with COVID-19 without Parkinson reported those same outcomes in 3 (12%), 2 (7.7%), 2 (7.7%), 1 (3.8%), and 0 (0%) patients, respectively.
“Overall, with the caveat that we still have a relatively small number of people in our group, it seems that the symptoms are not really that different in people with Parkinson and people without who have COVID,” Tanner said in a webinar presentation of the data. “This is not a population study and it’s not a systematic collection, it’s the people who came and told us their experience on Fox Insights, so we have to think of it with that limitation. But the good news is of those people, it didn’t seem that the people with Parkinson were more severely affected.”
In addition to the aforementioned insights, the dataset validated some of the effects of the pandemic which have been reported previously, including the impact on people of color with chronic disease. Out of the total surveyed group, 62% reported having canceled health care appointments, involuntary reductions of required in-home care, or difficulty in obtaining medication. Respondents who were non-white and of lower incomes were found to be independently associated with difficulty in obtaining medicines for Parkinson disease.
Furthermore, use of telemedicine appointments were reported by 39% of people with Parkinson, but those with lower incomes were found to be less likely to attend appointments through telemedicine.
"Having COVID with Parkinson's was unsettling, because doctors still don't know much about how these two diseases interact," said Dan Morris, a patient with Parkinson who had COVID-19 and completed the survey, in a statement. "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."
Thirty-five percent of respondents with Parkinson disease reported issues in completing ≥1 essential daily activity, such as getting food. Many reported that exercise or social activities— cornerstones of their care—needed to be canceled due to these challenges. A portion of patients noted that they took online classes to continue activities, but those with Parkinson of lower income were less likely to report alternative ways of seeking care. The interruptions to care in combination with self-isolation, were associated with worsening of Parkinson-related symptoms.
“We do also see that in people with Parkinson who have other infections and while we don’t know this for sure with COVID-19, over time as people recover, generally their symptoms improve. We’re hopeful that that will be the same case with a COVID infection,” Tanner said in the presentation.
With cases continuing to spike across the country, the survey data offer some key insights into the experiences of those in Parkinson community with the disease—and though hurdles remain before a vaccine will be available, earlier this week, some positive news came to light. Findings reported in The New England Journal of Medicine showed that the Moderna vaccine candidate mRNA-1273, encoded with a stabilized prefusion SARS-CoV-2 spike protein, induced anti-SARS-CoV-2 immune responses in all 45 of the trial’s participants, without any trial-limiting safety concerns identified.3
Investigators described the immunogenicity profile of mRNA-1273 as “rapid and robust,” particularly noting the 100-mcg dose vaccine eliciting high neutralization responses, Th1-skewed CD4 T cell responses, as well as a reactogenicity profile more favorable than the observed higher and lower doses. The findings, reported by the mRNA-1273 Study Group, supports the advancement of a 100-mcg dose vaccine to a phase 3 trial assessment in later summer 2020, while a phase 2 trial of a pair of different doses of the potential vaccine continue among 600 healthy adults.
The Fox Insight online clinical study was launched in 2017 to facilitate a partnership between patients and researchers to offer visibility into the lived experience, genetics, and variability of Parkinson. To this point, it has enrolled almost 50,000 participants, making it the largest cohort of patient-reported outcomes in Parkinson's research. The survey remains open and can be accessed here: foxinsight.org. The Michael J. Fox Foundation noted that the data 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 here: foxden.michaeljfox.org.
1. Michael J. Fox Foundation Releases First and Largest Data Set of Self-Reported Outcomes on COVID-19 and Parkinson's Disease [press release]. New York, NY. Michael J. Fox Foundation. Published July 14, 2020. Accessed July 16, 2020. prnewswire.com/news-releases/michael-j-fox-foundation-releases-first-and-largest-data-set-of-self-reported-outcomes-on-covid-19-and-parkinsons-disease-301093098.html.
2. SURVEY RESULTS ON THE PANDEMIC AND PARKINSON’S: COVID-19 IMPACT ON DISEASE, CARE AND COMMUNITY. MJFF Third Thursdays Webinar. Presented July 16, 2020. https://on24static.akamaized.net/event/24/61/14/1/rt/1/documents/resourceList1594833506690/mjffjuly2020covidsurveywebinarslidesfinal1594833502241.pdf
3. Jackson LA, Anderson EJ, Rouphael NG, et al. An mRNA Vaccine against SARS-CoV-2 — Preliminary Report. N Engl J Med. Published online July 14, 2020. doi: 10.1056/NEJMoa2022483