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Creating an international dermatology COVID-19 registry

As new symptoms of COVID-19 came to light, dermatologists collaborated to create a registry to track the dermatological manifestations of the virus.

Dr. Freeman's story

Esther Freeman, MD, PhD, DTM&H, FAAD
Esther Freeman, MD, PhD, DTM&H, FAAD, Principal Investigator for the COVID-19 Dermatology Registry
Dermatologists know that the skin provides a window into the body’s health. We are used to seeing evidence of viruses like measles and chickenpox on the skin. At the beginning of the COVID-19 pandemic, none of us really knew if the virus definitively had skin manifestations. Those of us on the American Academy of Dermatology’s COVID-19 Task Force realized that we needed a way to track developments.

The purpose of the registry was to capture observations from health care providers worldwide. This would allow us to see trends and form hypotheses about the virus. A project of this scale normally takes upwards of six months to start. With support from Massachusetts General Hospital, the AAD’s COVID-19 Task Force, and the International League of Dermatological Societies, we cleared ethical approval and launched the registry in just eight days in early April 2020. It was, and continues to be, a team effort.

Any health care professional can contribute to the registry by filling out a brief form about a patient with a suspected or confirmed case of COVID-19 and noticeable skin changes. We also collect data on patients who contract the disease with existing dermatologic conditions like eczema and psoriasis.

In the first four months of the registry, frontline clinicians—ranging from dermatologists and podiatrists to intensivists and pediatricians—contributed more than 1,000 submissions from 40 countries. Almost half of these reports specified unusual pernio-like red or purple tender bumps on the toes and fingers. This phenomenon, which came to be informally known as “COVID toes,” made global headlines and continues to be researched. It may also provide clues to scientists studying how the body successfully controls or contains the novel coronavirus in certain patients.

We’ve shared this data in several articles published in the Journal of American Academy of Dermatology. I’ve had physician colleagues from other specialties tell me they diagnosed active COVID-19 from skin findings alone based on our work. If this effort contributes to preventing even a few transmissions of the virus, I consider that an achievement.

Remarkable levels of collaboration across specialties and the international health care community during these unprecedented times have been the key to the registry’s success. For me, this collaboration has been a bright spot in an otherwise dark time.

The infectious disease physician's perspective

Ingrid V. Bassett, MD, MPH

“Dr. Freeman and her colleagues quickly recognized the need to identify dermatologic manifestations of COVID-19 from the global community and assembled a registry in record time. Her work has advanced our understanding not only of the acute manifestations of COVID-19, but also of long-term skin findings which may give insights into the immune response to the virus. By drawing on worldwide clinical observations, Dr. Freeman’s work opens up a field of inquiry in immunology. This is an outstanding achievement.”

─ Ingrid V. Bassett, MD, MPH Massachusetts General Hospital COVID-19 Task Force – Epidemiology/Outcomes Team Leader, Harvard Medical School, Division of Infectious Diseases

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