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Health Agencies Update
February 23, 2021

Collecting Data About COVID-19–Related Brain Symptoms

JAMA. 2021;325(8):712. doi:10.1001/jama.2021.0791

The National Institutes of Health (NIH) is planning to launch a new database and biobank to collect information from clinicians about neurological problems associated with coronavirus disease 2019 (COVID-19).

A new database will gather information about neurological symptoms associated with coronavirus disease 2019.

“We know that COVID-19 can disrupt multiple body systems but the effects of the virus and the body’s response to COVID-19 infection on the brain, spinal cord, nerves, and muscle can be particularly devastating, and contribute to persistence of disability even after the virus is cleared,” Barbara Karp, MD, program director at the NIH’s National Institute of Neurological Disorders and Stroke, said in a prepared statement.

COVID-19–related neurological problems include headaches, fatigue, cognitive difficulties, stroke, pain, and sleep disorders, Karp noted. Long-haulers, who often had mild or moderate COVID-19 symptoms early in their disease, have reported experiencing “brain fog,” crushing fatigue, and other neurological symptoms for months after they were infected. One goal of the NeuroCOVID Project is to gain insight into how common these problems are; another is to assess these problems among pregnant women and their infants.

US clinicians and clinical sites can submit information about neurological symptoms, comorbidities, disease course, complications, sequelae, and outcomes to the NeuroCOVID Project databank. The databank will be used to assess new neurological COVID-19 complications as well as potential exacerbation of preexisting neurological conditions. In addition, clinicians and clinical sites can submit specimens, such as blood, plasma, cerebrospinal fluid, and tissue, to the project’s biobank. No personally identifying information will be collected or stored.

Scientists studying the prevention, management, and treatment of COVID-19–associated neurological problems will be able to submit requests to use the project’s data and biospecimens.

The NeuroCOVID Project is led by Andrea Troxel, ScD, and Eva Petkova, PhD, who are on the faculty of the NYU Grossman School of Medicine. Information on how to contribute to the project as a clinical partner is available at https://bit.ly/3ceLHVe.