The COVID-19 situation is fluid. Please follow your medical care provider’s advice for care. If you are a cavernous malformation (CCM) patient who has tested positive for COVID-19 infection, please join the CCM COVID-19 Registry for our joint study with the University of Chicago and Mayo Clinic.
Consensus Statement by the Alliance to Cure Cavernous Malformation Scientific Advisory Board Regarding COVID-19 and cavernous malformations
Updated April 28, 2020
The Alliance to Cure Cavernous Malformation Scientific Advisory Board continues to monitor any specific reports or emerging concerns about COVID-19 and cavernous malformations. To date, there is no evidence that cavernous malformation patients will be affected differently by this pandemic than other patients of similar age, medical co-morbidities, and levels of disability. We are aware of reports of stroke in young patients, excessive clotting, and other neurologic manifestation of COVID-19, but it remains unclear how these may impact cavernous malformation patients specifically.
Until further evidence arises, patients with cavernous malformations with recent bleeds in the past year and associated new neurologic symptoms, surgery on the brain or spine in the past 6 months, persistent neurologic disability from prior bleeds, or active seizures may be a group considered as having comorbidity and are potentially at higher risk with COVID-19. This is in addition to other cases designated high risk by the Centers for Disease Control (CDC) because of age (65 years or older), heart disease, chronic lung conditions, immunocompromise, pregnancy, or diabetes. In the last month, the CDC has added severe obesity (BMI>40), chronic kidney disease undergoing dialysis, and people with liver disease to the high-risk category.
For high-risk individuals, it is important to adhere to social distancing, disinfection of the environment, wearing facial masks in public, and practicing hygiene per CDC guidelines. It is also important to avoid contact with individuals (including family and caretakers) exposed to COVID-19, recently traveling back from areas heavily affected by the disease, or exhibiting fever or other flu-like symptoms until those persons prove negative testing for the COVID-19 coronavirus, or until 14 or more days after their exposure, travel, or last symptoms. Travel avoidance is recommended, unless absolutely necessary until travel advisories related to COVID-19 are lifted. Caregivers and those individuals who are sharing a home with high-risk cavernous malformation patients should follow the same precautions.
We encourage patients to not delay medical care or imaging for cavernous malformation if recommended by your physician, including necessary travel for medical care and timely evaluation if new neurologic symptoms arise. Patients should continue their seizure medications, and other medications for medical conditions, and notify their cavernous malformation doctors about any positive test for COVID-19. It is recommended that patients in clinical trials continue to adhere to ongoing trial procedures and notify their trial investigators about positive testing for COVID-19.
We also urge any patient with a known cavernous malformation of the brain or spinal cord, who has tested positive for COVID-19, to report to our CCM COVID-19 Registry. A family member or caretaker may report on behalf of a sick or deceased patient. You will be contacted back by a research coordinator for a telephone consent and questionnaire about your COVID-19 experience in relation to cavernous malformation.
On behalf of the Alliance to Cure Cavernous Malformation Scientific Advisory Board,
Dr. Issam Awad, Chair, Alliance to Cure Cavernous Malformation Scientific Advisory Board
University of Chicago Neurosurgery
Dr. Kelly Flemming
Mayo Clinic Rochester Neurology
Dr. Kevin Whitehead
University of Utah Cardiology
Dr. Rustam Al-Shahi Salman
University of Edinburgh Neurology, UK
Updated 4.28.20
