The American Academy of Dermatology and International League of Dermatological Societies Monkeypox Registry: Expanding the COVID-19 registry to emerging infections

Abstract

The World Health Organization declared the global monkeypox outbreak a public health emergency of international concern in July 2022. In response, the American Academy of Dermatology and International League of Dermatological Societies expanded the existing COVID-19 Dermatology Registry to become the “AAD/ILDS Dermatology COVID-19, Monkeypox, and Emerging Infections Registry.” The goal of the registry is to rapidly collate cases of monkeypox and other emerging infections and enable prompt dissemination of findings to front-line healthcare workers and other members of the medical community. The registry is now accepting reports of monkeypox cases and cutaneous reactions to monkeypox/smallpox vaccines. The success of this collaborative effort will depend on active case entry by the global dermatology community.

Capsule Summary.

• •As of August 2022, the American Academy of Dermatology and International League of Dermatological Societies has expanded the existing COVID-19 Dermatology Registry to become the AAD/ILDS Dermatology COVID-19, Monkeypox, and Emerging Infections Registry.
• •The registry is now accepting reports of monkeypox cases and cutaneous reactions to monkeypox/smallpox vaccines from healthcare workers globally.

On July 23, 2022, the World Health Organization declared the global monkeypox outbreak a public health emergency of international concern.¹ Two weeks later, the American Academy of Dermatology (AAD) and International League of Dermatological Societies (ILDS) announced the addition of a new Monkeypox Registry to the existing COVID-19 Dermatology Registry platform, becoming the “AAD/ILDS Dermatology COVID-19, Monkeypox, and Emerging Infections Registry.” Launched on August 4, 2022, the same day the United States declared monkeypox to be a public health emergency, the expanded registry accepts cases of monkeypox and monkeypox/smallpox vaccine reactions to better understand its clinical presentation, course, and treatment outcomes globally.

According to the United States Centers for Disease Control and Prevention, there are >45,000 reported cases of monkeypox globally and >16,000 cases in the United States as of August 2022. Detailed dermatologic description, lesion morphology, time course, and treatment outcomes are still lacking.2, 3, 4, 5 Case series of the 2022 outbreak based in Europe showed that all patients with polymerase chain reaction-confirmed monkeypox (total N = 910) presented with mucocutaneous lesions,3, 4, 5 and up to 13% of patients presented with skin lesions as the only symptom of infection.⁴ As such, the dermatology community is uniquely positioned to aid in the detection, study, and management of this rapidly evolving outbreak.

The original purpose in establishing the AAD/ILDS registry was to rapidly collate cases of COVID-19 dermatologic manifestations and enable prompt dissemination of findings to front-line health care workers. Information from the registry has led to 20 publications, data sharing across multiple platforms/countries, and more than 190 million media impressions, allowing the dermatology community to aid in the public health understanding of COVID-19 infection and combat misinformation around vaccine reactions. The registry will continue to collect these COVID-19 associated cases, as well as cases of monkeypox, monkeypox vaccine reactions, and emerging infections in the future.

The registry is now accepting reports of monkeypox cases and cutaneous reactions to monkeypox/smallpox vaccines (www.aad.org/monkeypoxregistry). All members of the medical community may participate. Cases submitted to the registry are de-identified, and the Institutional Review Board of Massachusetts General Hospital deemed the study as non-Human Subjects Research. All health care providers (physicians, nurses, residents,and so on) in all countries are eligible to submit cases via the online survey, which should take 5-7 minutes to complete.

Data collection with registries poses several limitations as cases are not meant to replace robust epidemiologic data. The purpose of this initiative is not to report incidence of disease, but rather, to allow the broader medical community to rapidly share observations regarding disease presentation and outcomes in a systemic manner and serve as a hypothesis-generating tool.

As reports of disproportionate impact on vulnerable communities continue to grow, including those with concomitant STIs (29%), people living with HIV (35% to 42%), and groups within the LGBTQ community, the dissemination of accurate data will become even more salient. Without widespread availability of treatment or prophylaxis, efforts to improve the medical community's ability to identify cases will be crucial for containment.

The success of this collaborative effort will depend on active case entry by the global dermatology community.

Conflicts of interest

Esther Freeman, Klint Peebles, Misha Rosenbach, and George Hruza are members of the AAD Ad Hoc Task Force to Create Monkeypox Content. Esther Freeman is the Principal Investigator of the AAD/ILDS Dermatology Registry for COVID-19, Monkeypox, and Emerging Infections. Alexander Stratigos is the President of the EADV. Mark Kaufmann is the President of the AAD. Lars French is the President of the ILDS. Henry W. Lim and Claire Fuller are Board members of the ILDS.