Understanding the dermatologic manifestations of COVID-19

By Kathryn Schwarzenberger, MD, June 1, 2020

In this month’s Clinical Applications column, Physician Editor Kathryn Schwarzenberger, MD, talks with Esther Freeman, MD, PhD, about the COVID-19 Dermatology Registry. The registry was developed by Dr. Freeman and is housed by Massachusetts General Hospital and is a collaboration with the AAD Ad Hoc Task Force on COVID-19.

Dr. Schwarzenberger: Tell us about the COVID-19 Dermatology Registry.

Dr. Freeman: The new COVID-19 Dermatology Registry is collecting information about the dermatologic manifestations of the COVID-19 virus. The survey is for all health care professionals worldwide who are taking care of COVID-19 patients who develop dermatologic manifestations, or dermatology patients with an existing condition who then develop COVID-19.

Dr. Schwarzenberger: What was the impetus behind the development of the registry?

Dr. Freeman: We first started hearing about reports of dermatologic manifestations with COVID-19 in March 2020, and these were not well characterized at the time. A lot of the initial reports were single-case one-offs or reports on social media. We realized that it’s going to be important to collect data in a more coherent manner to collaborate across not only institutions but also across countries.

Dr. Schwarzenberger: How did you go about launching this registry?

Dr. Freeman: I have been amazed by the high level of international collaboration and how quickly we’ve managed to cut through red tape to develop this registry. Normally getting something like this going would probably take a long time, at least several months if not longer. However, we were able to go from the initial conception of the idea, to it being IRB-approved, and live with people able to enter cases, in seven days. I’m very appreciative of the staff at the AAD who have helped us promote this, and Massachusetts General Hospital for hosting it. Mass General’s IRB has fast tracked all COVID-19 reviews.

We’ve taken a lot of cues from the rheumatology community. They were on the forefront of this and developed the Global Rheumatology Alliance registry about 10-14 days before us. They used a similar model in that it’s housed in an academic center for data security and protection reasons. The rheumatology community was incredibly helpful by sharing their lessons learned and their know-how. That significantly speeded up our process and we didn’t have to start from scratch. We’re obviously asking different questions, but we were able to take what they learned and put that into very quick practice. I am incredibly appreciative of the collaborative spirit across specialties, countries, institutions, academic partnerships, and the AAD.

Dr. Schwarzenberger: What type of information are you looking for?

Dr. Freeman: There are probably three main groups of patients that can be entered into the registry. The first is patients who have COVID-19 or those who are suspected of having COVID-19 who are developing cutaneous manifestations. This might be something that the physician or provider thinks is directly related to the virus itself, or it could be that a patient has been given a drug for COVID-19 and has developed a drug rash. The physicians who are entering their cases have the opportunity, when they’re giving us their case summaries, to tell us if they have an opinion on what the etiology of the rash might be.

The second group of patients are those who have a preexisting dermatologic condition and then develop COVID-19. We’re interested to hear what happens to their preexisting dermatologic condition, whether that’s psoriasis, eczema, vasculitis, lupus, etc. What happens to people who develop COVID-19 who have these conditions? Do they flare? Do they stay the same? What happens with their medications?

The third group is patients who are on dermatologic medications. This could include biologics, or other medications such as isotretinoin or hydroxychloroquine. We want to try to understand what may occur when they develop COVID-19.

Dr. Schwarzenberger: Should survey participants only log confirmed cases?

Dr. Freeman: No. One of the early questions in the registry is if the case was confirmed or not confirmed, and if so, how — was it confirmed by PCR or antibody testing? This allows us on the back end to analyze cases that we know for sure are COVID-19 and those that are suspected COVID-19. Don’t shy away if it’s an unconfirmed case, but you think it’s COVID-19. We have the ability to capture and analyze that uncertainty. By the time you are reading this, I hope we have more widespread testing, including antibody testing!

Dr. Schwarzenberger: Is this survey just for dermatologists?

Dr. Freeman: No. Participation among the dermatology community is key, but I would appreciate dermatologists reaching out to intensive care physicians and other health care professionals who are on the front lines because they may be seeing some of these dermatologic manifestations. This is not meant as a registry for dermatologists. It’s meant for everyone.

Dr. Schwarzenberger: What if a medical professional wants to contribute but is concerned about patient privacy?

Dr. Freeman: There is no PHI collected so it is de-identified from the perspective of the patient. That was important for an ethical and security consideration. The data are housed in REDCap — an internet-based database that is compliant and secure — behind a firewall. We do ask those who contribute to provide their contact information in case we have a follow-up question.

Dr. Schwarzenberger: What limitations should be noted here about the registry?

Dr. Freeman: This registry is really like a giant case series. I had concerns about the epidemiologic methods involved in the sense that I think it’s very important that people understand that we do not have a denominator. This registry can’t really tell people the incidence or prevalence of dermatologic manifestations. We can just describe the dermatologic manifestations that the international community has noticed. We don’t have a sense of how common or frequent they are on a population level. This is not a cohort study. This is not a case-control study.

Similarly, this registry is not going to be the best way to ascertain, for example, the efficacy of hydroxychloroquine in reducing risk of COVID-19. I think it’s important to be aware of the registry limitations. It can be hypothesis generating and rapid, and those are the advantages.

Dr. Schwarzenberger: How many health care professionals have participated in the survey?

Dr. Freeman: At 48 hours after launch we had about 30 cases. After 11 days, we had 130 cases. At 25 days, we 500 cases. We now have data from 23 countries.

Dr. Schwarzenberger: What is the ultimate goal for the information that is being collected?

Dr. Freeman: Part of the goal of this registry is to have real-time analysis and not sit on it for a year and then publish a glossy paper. The goal is to get the data out to people on the front lines as quickly as possible.

Dr. Schwarzenberger: What are you hoping to learn from the data collected in the registry?

Dr. Freeman: The information is important for a couple of reasons. First, we don’t really know right now if some of these skin manifestations could potentially be used to help people identify COVID-19 patients, much like we have with the anosmia. As of today, we don’t know whether some of these dermatologic manifestations could be helpful to people on the front lines, or individual patients who are realizing that they may be infected and should really be sheltering at home. I think this is really important to understand the biology of the disease.

Additionally, I think it’s important to have this information to help us understand what’s going on with the virus and the risks associated for our patients on different dermatologic medications or with different dermatologic conditions.

Esther Freeman, MD, PhD, is a dermatologist and epidemiologist, specializing in global health dermatology. She is an assistant professor at Harvard Medical School and director of Global Health Dermatology at Massachusetts General Hospital. She is chair of the International Alliance of Global Health Dermatology, and chair of the Academy’s Clinical Guidelines Committee.

Disclaimer: The views and opinions expressed in this article do not necessarily reflect those of DW.

Additional DermWorld Resources