Barbara Karp, MD, and Sharon Meropol, MD, discuss the recently launched NeuroCOVID databank from the NIH, which will track neurologic symptoms associated with COVID-19.
Barbara Karp, MD
A new database will collect information from clinicians about COVID-19-related neurological symptoms, complications, and outcomes as well as COVID-19 effects on pre-existing neurological conditions. The COVID-19 Neuro Databank/Biobank, dubbed “NeuroCOVID,” was created by the National Institutes of Health (NIH) and will be maintained by NYU Langone Health.
The database is also supported by the NIH’s National Institute of Neurological Disorders and Stroke (NINDS) and can be accessed by scientists for research studies on preventing, managing, and treating neurological complications associated with the virus. Additionally, the database may provide insight on how COVID-19 affects the nervous system, and how common, or rare, such complications are.
Barbara Karp, MD, program director, NINDS, and Sharon Meropol, MD, assistant professor, department of health, NYU Langone Grossman School of Medicine, believe this type of databank will not only increase the amount of information on neurological symptoms associated with COVID-19, but raise awareness for clinicians within the hospital setting to look out for such complications. Karp, who will serve on the Steering Committee for the project, and Meropol, sat down for a new segment of NeuroVoices to discuss the recently launched NeuroCOVID databank and highlight some of the advantages it can bring at this stage in the pandemic.
Barbara Karp, MD: Nothing at the NIH can move all that fast. As we were shutting down last spring and learning more about COVID, we saw the number of hospitalizations going up. We had the emerging reports of neurologic complications, mainly stroke and anosmia. These were indications of neurologic or nervous system too. We started thinking about how we could learn more about these neurologic complications. At the NIH, we don’t really have an acute care hospital itself. The intramural program has the clinical center, but we don’t generally see acute patients there with infections like COVID.
We thought that we could take advantage of a lot of the expertise we already had in NINDS-funded projects and centers. The quickest way to get something set up would be to do a supplement to an existing data center award because the data structure was already there. We put out a request for applications for supplements to existing brands because that can get funded quickly. That was awarded to NYU Langone, which already is providing the data center for 1 of the NINDS clinical trial networks called Epicnet, which is a pain clinical trial network. But the data center function was already there, so that’s how Sharon got involved on behalf of NYU.
Barbara Karp, MD: It’s relatively straightforward to get information on hospitalized patients because their information is already in the medical record. A lot of groups that have been reporting have been reporting on those who are hospitalized. What we really don’t know is how the brain, spinal cord, and nervous system in general is affected in people who were not hospitalized. Now, a lot of people with COVID are told to just stay home because their symptoms are not severe enough to warrant going to a doctor or being hospitalized. And yet, now we’re getting reports that even people who were not seriously acutely ill are developing neurologic problems.
They have brain fog, weakness or fatigue. We haven’t been able to capture information about what goes on early in the illness course, as well as what symptoms are emerging later in people who were either hospitalized or who were never hospitalized. We do know that people are affected, so we need to capture that data. How can you do that? We can do that by letting individual practitioners who are seeing patients acutely enter data, rather than just mining health systems or getting records from hospitalized patients. We could even have individuals provide their own data or encourage their doctors to do so. We’re trying to cast a much broader net than is possible just going through hospitalized or healthcare systems in that way.
Barbara Karp, MD: The symptoms are like the flu or anything else. So headache, dizziness, fatigue. These symptoms generally pass. The most serious symptoms we’ve seen are stroke and other encephalopathies or encephalitis. It’s not clear how much of that is a direct effect of the virus on the brain, and how much is post infectious or inflammatory where the immune system is trying to fight off the virus and attacks the brain or nerves themselves. Along with those serious encephalopathies, we’ve seen multi-system inflammatory disorder in children, which is very concerning.
The less common symptoms are Guillain-Barre syndrome and neuromuscular symptoms as well. The neuropsychiatric symptoms are becoming increasingly recognized and prominent, including not just depressed level of consciousness, but Frank psychosis, agitation, and delirium, which can be very disturbing to patients. Once you get out of the acute period, then we’re seeing what’s called long-term COVID or post COVID sequelae. People are reporting that after they get over the acute infection, they experience brain fog, fatigue, exercise and tolerance getting wiped out, with very little exertion. They experience postural hypotension every time they stand up and feel like they’re going to pass out blood pressure drops. We’re trying to get a feel for these later sequelae as well, a lot of which are in the neurologic domain.
Sharon Meropol, MD: From an epidemiologic point of view, you’ve got these relatively rare, but serious events like stroke or encephalopathies, but then you have this much larger population of people who have these lingering symptoms that can be debilitating and can really interfere with their ability to function in their daily lives. While the more serious events may represent a smaller population, and the larger group may be affected more by milder symptoms, we’re interested in both groups.
Barbara Karp, MD: Just the recognition. Evaluating patients, recognizing the neurologic symptoms, and asking the patients in particular about these things. A patient may be very reluctant to talk about cognitive or psychiatric symptoms. We want to make sure that clinicians are ware that these are issues for patients and that you should ask them directly. If you’re a functioning adult, you may not want to talk about the fact that your memory is not great, or that you’re having difficulty concentrating, or that you’re feeling fatigued. They may not want to speak about the troubling agitation or even their depression. Oftentimes clinicians have to ask about these things to get the data as part of their clinical care. We want to make not only neurologists, but those caring for patients with COVID aware that these symptoms are her, and to ask about them.
Sharon Meropol, MD: We’re getting a lot of interest, from a range of scientists who all want to see the data. But I would urge clinicians and scientists that the very best science we can do depends on the very best data. The more we can get, as soon as possible, means that we can do a better job creating generalized knowledge that will really benefit patients.
Transcript edited for clarity.