Coronavirus & Alopecia Reporting Database

Given the interest in the emerging and evolving coronavirus (COVID-19) pandemic and the questions regarding how this will impact patients with alopecia (including alopecia areata and other alopecias) who are treated with systemic immunomodulating medication, we have created a secure, online, de-identified Personal Health Identifier (PHI)-free reporting registry.

We encourage clinicians worldwide to report ALL cases of COVID-19 in their alopecia patients treated with systemic immunomodulating medication, regardless of severity (including asymptomatic patients detected through public health screening).

Approximately 5 minutes

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Reporting a case to this Surveillance Epidemiology of Coronavirus Under Research Exclusion (SECURE)-Alopecia registry should take approximately 5 minutes.

Please report only confirmed COVID-19 cases, and report after sufficient time has passed to observe the disease course through resolution of acute illness and/or death. 

With the collaboration of the international alopecia community, we will rapidly be able to define the impact of COVID-19 on patients with alopecia who are treated with systemic immunomodulating medication and how factors such as age, comorbidities, and systemic immunomodulating treatments impact COVID outcomes.

Key points:

• This is an international effort—we are counting on robust participation and collaboration
• We will provide the alopecia community with regularly updated summary information about reported cases, including numbers of cases by country, number of cases by treatment, etc. so the entire alopecia community has access to these data.
• The registry collects only de-identified data, in accordance with Article 11 of the General Data Regulation (2016/679/EU) and is processed in accordance to Article 6 d and e and Article 9 paragraph 2 g, h, i and j; and in accordance with HIPAA Safe Harbor De-Identification Standards.
• We have taken steps to guarantee the safety and security of the registry in accordance with EU Data Protection Requirements.

We hope you will actively contribute to this voluntary reporting system. Through broadscale participation and collaboration, we will be able to answer these very pressing questions for our alopecia patients and their caregivers.

We will provide regular, open access summaries of all reported cases in SECURE-Alopecia, for the benefit of the international alopecia community. If you have any questions about the registry, please contact COVID.Alopecia@nisrsolutions.com.