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 created a secure, online, de-identified Personal Health Identifier (PHI)-free reporting registry.
We encouraged clinicians worldwide to report ALL cases of COVID-19 in their alopecia patients, regardless of whether they were treated with systemic immunomodulating medication. Though patients with any severity of COVID could be recorded, all required confirmation (e.g. PCR/antigen) testing and it was requested that sufficient time had passed to enable observation of the disease course through to resolution of the acute illness and/or death.
Reporting a case to this Surveillance Epidemiology of Coronavirus Under Research Exclusion (SECURE)-Alopecia registry took approximately 5 minutes.
The international alopecia community collaborated to define the impact of COVID-19 on patients with alopecia who were treated with systemic immunomodulating medication. By combining efforts, they were able to analyze how age, comorbidities, and systemic immunomodulating treatments impacted COVID outcomes. Through their collective efforts, we were able to gain insight into this critical issue.
Key points:
• This was an international effort, as a result of robust participation and collaboration globally.
• It resulted in provision of the alopecia community with information at meetings and through email correspondence about reported cases, including numbers of cases by country and number of cases by treatment.
• The registry collected only de-identified data, in accordance with Article 11 of the General Data Regulation (2016/679/EU) and was processed in accordance with 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 took steps to guarantee the safety and security of the registry in accordance with EU Data Protection Requirements.
We hope this process contributed to knowledge that positively influenced care for our alopecia patients and their caregivers.