Findings from the Michael J. Fox Foundation’s (MJFF) coronavirus disease 2019 (COVID-19) survey, based on patient-reported information from Fox Insight, highlight the known adverse effects of general infections on worsening of motor and nonmotor symptoms in patients with Parkinson disease (PD). However, there still remains insufficient data on the specified risk of COVID-19 in the PD community, noted Vanessa Arnedo, vice president of Research Cohorts for MJFF, and Ethan Brown, MD, neurologist and principal investigator of the MJFF COVID-19 survey.
While not a known comorbidity linked with severe coronavirus disease 2019 (COVID-19) outcomes, prior research on Parkinson disease (PD) has found that any general infection can lead to the worsening of motor and nonmotor symptoms among patients with PD. Moreover, the potential cancellation of in-person health care appointments, support groups, and exercise classes may present an additional hurdle for those who relied on these services.
There are ultimately a myriad of factors known to affect those with PD, ranging from mental health issues to physical detriment. When it comes to delineating these effects, especially amid the pandemic, it can be difficult, according to Vanessa Arnedo, vice president of Research Cohorts for MJFF, who noted the variable nature of the condition that is often based on social determinants of health, such as location, access to care, and race.
To better understand the personal experience of patients with PD, as well as family members of people living with PD, MJFF launched the Fox Insight study in 2017. Since then, MJFF created the Fox Data Exploration Network, or Fox DEN, to provide this information to researchers within PD studies, which then led to a novel COVID-19 survey among patients with PD. The survey serves as the first and largest data set of self-reported outcomes on COVID-19 and PD.
In an interview with The American Journal of Managed Care®, Arnedo and Ethan Brown, MD, neurologist and principal investigator of the MJFF COVID-19 survey, highlighted novel findings from the survey, as well as future research needs to better understand the specified risk of COVID-19 in the PD community.
AJMC®: Hello, I'm Matthew Gavidia. Today on MJH Life Sciences’ Medical World News, The American Journal of Managed Care® is pleased to welcome Dr Ethan Brown, principal investigator of the COVID-19 survey by the Michael J. Fox Foundation for Parkinson Research (MJFF) and Vanessa Arnedo, vice president of Research Cohorts for MJFF.
Can you both just introduce yourself and tell us a little bit about your work?
Brown: So, I'm Ethan Brown. I'm a neurologist and movement disorder specialist at the University of California, San Francisco. I see patients with Parkinson disease and other movement disorders.
Arnedo: I'm Vanessa Arnedo, vice president of Research Cohorts at MJFF, which is the world's largest nonprofit funder of PD research. We exist to accelerate the development of better treatments for people living with PD and ultimately to find a cure.
I lead a team that focuses on that mission by developing open access cohort study data that researchers can use to help identify better measures for PD to accelerate therapeutic development.
AJMC®: Vanessa, just to get us started off, can you explain MJFF’s online clinical study, Fox Insight?
Arnedo: Sure. So, as you can imagine, in light of the pandemic, many clinical trials have been paused for enrollment or have moved to remote or virtual models for visits during COVID-19, but there are still opportunities to get involved in research.
So, Fox Insight is an online clinical study launched by the Fox Foundation back in 2017, and this study aims to learn more about the lived experience of people living with PD or family members of people living with PD. It's rapidly become the largest PD cohort globally with more than 48,000 participants enrolled in the study today. Participants complete study visits, online surveys about health, symptoms, lifestyle about every 3 months and the Foundation launched a Fox Insight survey in April that aimed to understand the impact of COVID-19 on the PD community.
AJMC®: Ethan, can you discuss how the Fox Insight COVID-19 survey was conducted? How was patient data derived and what type of questions were asked?
Brown: Sure. So, I think the most remarkable thing about this survey to begin with, beyond the utilization of Fox Insight, which is a fantastic resource, but really it was a collaborative effort in developing this survey. This survey was developed very early on when information about COVID, and people's experience with COVID was really just surfacing and has been changing a lot as we know even today.
So, it was a collaborative effort both among doctors, we reached out to different types of physicians, infectious disease experts, occupational health experts, but also people with PD, and there are a lot of people with PD that were very ready and willing to test the survey, to weigh in and comment, and have continued really throughout the process helping us understand some of the data and data analysis. So, that really helped us hone the questions very quickly. So, we were able to get the survey out by the middle of April. Then, there was a huge response.
So, just to focus on the questions of this survey, we really want to understand 2 aspects. So, first of all, among people who actually were infected with COVID, and had PD, as well as those that did not, how that was affecting them, how their presentations of COVID were, how the outcomes of COVID were, and how it affected their symptoms of PD.
Realizing that we were only going to reach a small number of those that could answer an online survey, but then we were also very interested in how the pandemic was affecting people with PD. I mean, the pandemic has affected everyone in huge ways, and people with PD have a lot of different types of needs. They rely on a lot of outpatient services, appointments, physical therapy, exercise classes, support groups that we really feel help their symptoms and are important. So, we really want to understand: How were these being disrupted? Were people finding other ways to do it? If they were disrupted and for whom? And how it was affecting their symptoms? That was a big, big focus of the survey, as well.
AJMC®: While prior research has indicated that people with PD may not be more likely to be infected or experience worse outcomes due to COVID-19, recent Fox Insight survey results suggest notable adverse effects such as that on motor and nonmotor symptoms. Ethan, can you expand on these findings? How should movement disorder specialists manage these potential risks?
Brown: Sure, that's a great question. I think just to state that, this survey really couldn't look at the risk of COVID in people with PD—that would really require a larger survey of people with and without. As I said before, the people that answered this were obviously people that were well enough to come to the computer and answer this type of survey. We hope to maybe capture more people in the future, but for now we captured either people that have recovered or people that were healthy from it.
So, we can't really weigh in on the risks of COVID in particular. We did look at outcomes, and they don't seem to be different within our survey, in terms of severe outcomes, again, within this specific group for people with and without PD; but we did notice a lot of motor symptoms and non-motor symptoms that worsened and I think that this reflects a common experience in people with PD that when people get sick for whatever reason, especially with some type of infection, a lot of their symptoms may get worse. In some cases that may be the most prominent presentation of an infection even—is that a lot of PD symptoms suddenly get worse.
So, it's a standard thing that if a movement disorders doctor, a neurologist sees a patient with PD and their symptoms suddenly get worse, it's standard of care to think about an infection. I think our research suggests that now, depending on where you are and exposure, that COVID should also be considered. That's not to say that if your symptoms worsen, that you have it, but it's something that your doctor may consider. I think going forward, we expect these symptoms just with other infections to come down and to improve. I think that's 1 of the goals of our follow-up research.
AJMC®: Vanessa, can you discuss what is the Fox Data Exploration Network, or FOX DEN? What information is represented and how can it be leveraged by researchers worldwide within the field of PD?
Arnedo: Sure. So, even during the pandemic, the MJFF remains strongly committed to working with urgency and determination to move these critical research programs forward and we're confident that progress in PD research continues full steam ahead. One of the ways that we are facilitating this is with Fox Insights Data Portal, the Fox Data Exploration Network, or Fox DEN.
This was a tool that was launched last year and this is the tool that makes de-identified data that is collected from Fox Insight participants about their lived experience of PD available to the broader research community. So, to date since last year, more than 460 researchers are actively analyzing the data in Fox DEN. Given that some research facilities are temporarily closed, these analyses can also happen from home in the same way that the data collection can happen from home.
So, even in 2020, since the pandemic started, we've actually seen 170 more researchers sign up to get access to the Fox DEN data. So, data analysis is happening, and the goal is to actually have these researchers make really critical insights about what is happening in the lived experience of people living with PD so that we can further this research aggressively.
AJMC®: Just to build off that, Ethan can you explain the significance of examining related implications of shelter-in-place and the threat of COVID-19 infection in the PD community?
Brown: Sure. Well, I think, in general, there's been evidence before and a lot of studies into how social isolation affects people, how people's both mental and physical health may be impaired in those settings, and as I mentioned before, people with PD are very much reliant on or use a lot of ancillary services that may be affected by shelter-in-place. We're particularly interested in people with PD because they rely on a lot of those services.
Also, because they may be at risk of a lot of the mental health implications of the shelter-in-place. So, people are very used to going out to having different support groups and having different support networks, and people with PD may be at risk of things like anxiety or depression—those are both common issues in PD and may be exacerbated by shelter-in-place.
Also, we know how much people with PD rely on physical activity and exercise. So, we wanted to understand if people were able to cope with that with shelter-in-place, how much that was affected, and if that was related to other symptoms of PD.
AJMC®: Similar to that found in general data on the pandemic, low-income and minority patients with PD were found to be at greater risk of notable barriers to care such as obtaining medications and telehealth use. Vanessa, how has the MJFF worked to advise patients who may be affected by these obstacles?
Arnedo: So, the MJFF continues to strongly advocate for the expanded telemedicine and telehealth policies that people with PD require to make sure that the community is represented in negotiations about COVID-19 support efforts. I would encourage everyone to visit our website to read much more detail on our policy priorities at michaeljfox.org/policy. PD is such a variable disease, and what's important about this survey is that it actually highlighted some of the barriers and disparities in the access to care. So, to ensure that we are pursuing potential cures for everyone with PD, we need to include people who are from diverse backgrounds in PD research and participation in Fox Insight is 1 of those ways that individuals from diverse backgrounds can begin their participation.
Last year, the Foundation also launched a new study that is focused on increasing the diversity in Parkinson's research called Fostering Inclusivity in Research Engagement for Underrepresented Populations in Parkinson Disease, or FIRE-UP PD, and again, the goal of this study is to engage people of diverse backgrounds that have been historically underrepresented in research to encourage enrollment in Fox Insight, as well as other PD trials that really need volunteers today. So, that study is ongoing and this is something that the Foundation continues to prioritize
AJMC®: Ethan, with insufficient data on how COVID-19 and PD interact, what further information is warranted to better understand this relationship?
Brown: So, I think there are several things that could happen. First of all, from our perspective, we're looking forward to repeating this survey at some point and trying to understand how these symptoms may change, but also any symptoms that may persist and how, and also capture more people that may have been infected with COVID. I think what's really needed and we haven't seen yet is more of a systematic, maybe even prospective analysis of people both with and without PD, where you could adjust for equal levels of illness to really understand if people with PD are at any particular risk for symptoms of COVID or for being infected with COVID.
AJMC®: Lastly, are there any other concluding thoughts that either of you have that have not yet been addressed?
Arnedo: I would just like to encourage everyone with and without PD to learn more and get involved in PD research. First step can be to visit foxinsight.org to enroll as a participant, and for researchers that are interested in analyzing some of this de identified data, I encourage everyone to visit foxden.michaeljfox.org.
Brown: Yeah, I would just second that. I think that Fox Insight is a fantastic way for people to get involved in research. People that don't have access to a major medical center now in the setting of the pandemic, really for anyone, we're looking to understand as much as we can about PD, and the survey’s still open for anyone looking to be involved in the survey.
AJMC®: To learn more, visit our website at ajmc.com. I'm Matthew Gavidia. Thanks for joining us!