The Rosenthal–Trotter MS Chair in Neuroimmunology at Washington University School of Medicine in St. Louis details why the COViMS registry can serve as an important instrument for clinicians who treat patients with multiple sclerosis.
Anne Cross, MD
In the midst of the COVID-19 pandemic, the Consortium of Multiple Sclerosis Centers (CMSC) and National Multiple Sclerosis Society came together to create COViMS, a new North American database that captures data on people with multiple sclerosis (MS) and other related disorders who have been affected by COVID-19.
As clinicians learn more about COVID-19, the effects of the disease on neurologic disorders are still unclear at the moment. Anne Cross, MD, professor of neurology, and Manny and Rosalyn Rosenthal—Dr. John Trotter MS Chair in neuroimmunology, Washington University School of Medicine in St. Louis, has been an active member of both organizations for years and is now following suit by changing practice styles amid COVID-19.
In an interview with NeurologyLive, Cross details the importance of capturing such data at a pivotal time, and how it can become a tool for clinicians to better understand more about treating their patients and learning about COVID-19.
Anne Cross, MD: Many of us in the field who are MS specialists were receiving questions from clinicians, both MS-specialists and non-MS specialists, and from patients about whether to continue their MS disease modifying therapies (DMTs) in the midst of COVID-19. We were getting questions like “does having MS put people at an increased risk,” and also questions related to safety of specific DMTs for MS. Early on, we didn’t have any information or advice to give out based on real data. It made us realize that we needed to collect information on what was happening to our patients.
I’ve been involved with the CMSC, the National MS Society, and NARCRMS (North American Registry for Care and Research in Multiple Sclerosis) over the past few years, and I contacted the person who set up the registry for NARCRMS, Kottil Rammohan, MD. I talked to Dr. Rammohan, a professor of neurology at the University of Miami, and he was already thinking that we should set up a registry as well. We talked to June Halper, CEO of CMSC, and contacted the National MS Society of the US and the MS Society of Canada, and collaboratively put together the COVIMS.org web-based online registry, which basically asks for information on patients with MS or similar diseases, including neuromyelitis optica and myelin oligodendrocyte glycoprotein (MOG) antibody disorder, who have been affected by COVID-19.
We quickly put together a list of questions that we thought could be answered in a timely manner by a busy clinician. We wanted to know specific outcomes of what happened to patients, but also what DMT they had been taking, how disabled—if at all—they were from their MS, and what comorbidities—such as hypertension and cardiovascular disease—they had that could potentially have influenced the COVID-19 outcomes. As of this April 27, 2020, we have 109 patients in our registry, 105 of whom have MS, 2 who have neuromyelitis optica and 2 have MOG antibody disorder. We have data online now, at the site. We’ve also collected data on their gender, age, type of MS, what DMTs they take, which comorbidities they might have and then the outcomes—what happened to them when they got COVID-19. We want to know, did they do well or did they go into ICU? Were they put on a ventilator? Did they die? We’ve had 3 deaths in the MS group so far. We’ve had 1 person with MS who was asymptomatic but had a positive test for the virus. The idea is that once we get a sufficient amount of information on outcomes, clinicians will be able to make their own interpretations.
We will start to see the impact once we get a sufficient amount of cases, particularly in people who are on individual disease modifying medications, because these all affect the immune system, but in different ways. For example, if we find out that everyone on 1 particular DMT who developed COVID-19 did well, or conversely, a large proportion of those on that DMT were admitted to the hospital or needed ventilator support, then we might modify our treatments for patients based on that information. We can only make conclusions, though, if we get a sufficient number of cases, so we will need clinicians to enter data on their patients who develop COVID-19. Unfortunately, we will always lack the denominators.
We’ve never experienced this before. We certainly haven’t experienced this particular virus and we don’t have any good treatments yet. If we had vaccinations against the virus and good, safe treatments, this registry would probably be less important. In the MS world, we have 17 different drugs that we can use to for disease modification that improve relapse rates and long-term outcomes. These medications have their individual effects on the immune system, but they are different. Some can cause profound immune suppression. A person might guess that the immune system would be important to fight off the virus, but maybe that’s not the case. Maybe having a dampened immune system would actually improve the outcomes because some of the bad outcomes are related to too strong of an immune response. That’s just a speculation.
We need to understand this better, and if we can figure out whether some of our patients are doing particularly poorly or particularly well on given drugs that have certain effects on the immune system, then it might help us to better understand the COVID-19 disease as a whole.
We designed this registry specifically to be aligned with other international databases, in particular, the MS Data Alliance (MSDA). A lot of our questions are exactly the same as they have on the MSDA registry. The idea was to not only put all of our data together but do it in a way that’s as easy as possible. Italy has its own database due to the large amount of cases, but their database form has multiple pages to fill out. We tried to make our form simpler so that we could reach our goal of obtaining every patient with MS who got COVID-19 in North America into the database. We want to advertise it widely and expand into all parts of North America, Mexico, and perhaps Central America. We’re asking clinicians to enter the data after a patient has had the disease at least 7 days or until that patient has turned the corner on their disease progression because once the clinician submits the data, it can’t be recalled. We don’t want a clinician to submit data on a patient when they don’t yet know what the outcome will be.
We are very interested in getting data on any MS patient who has a positive COVID-19 test but is asymptomatic. Those people should be followed long enough to know that they’re asymptomatic or have virtually no symptoms. We’re hoping to learn about COVID-19 from this, too. With patients taking different DMTs with known but different effects on the immune system, this might teach us more about the COVID-19 disease by knowing what happens when a person takes a specific drug with a specific effect on the immune system.
This registry is not a registry for patients to enter data. This is a clinician driven registry, and if clinicians wish to learn more about how or when to enter patient information, they should feel free to talk to me. There are other registries out there for patients with MS and COVID-19, where the patient directly enters their own information, but in the COViMS.org registry we want clinicians to enter the data. Our hope is that nurse practitioners and doctors who may all take care of the same patient will communicate with each other so that only one of them enters the information on a given patient one time, we hope to avoid duplicates of the same patient.
Transcript edited for clarity. To access the registry, click here.
COViMS Registry. Coronavirus and MS Reporting Database. COViMs website. Updated 2020. Accessed April 28, 2020. covims.org.