Patient registry to record COVID-19 positive alopecia patient outcomes
SECURE-Alopecia (securealopecia.covidderm.org) is a physician-entered, patient registry to record COVID-19 positive alopecia patient outcomes, on or off treatment, with scarring and non-scarring alopecia. We’re keen to pick up on all those treated with antimalarials, JAKis (given the emergence of baricitinib as a potential trial COVID-19 therapy) and anti-androgens in particular, given emerging data.
The SECURE-Alopecia data entry platform is matched with SECURE-AD (www.covidderm.org) & closely aligned to PsoProtect, the International Dermatology COVID-19 Registry (a collaboration of the American Academy of Dermatology and International League of Dermatological Societies) and other inflammatory disease registries, to enable comparative analyses. Collaborative discussions with these and other groups is ongoing.
As SECURE-Alopecia does not contain patient identifiable information, it is expected, like other COVID dermatology registries, to be exempt from IRB review, which is currently being validated in a number of jurisdictions.
SECURE-Alopecia has been endorsed by the World Congress of Hair Research, SPIN (Skin inflammation and Psoriasis International Network), the Australian Alopecia Areata Foundation, and has engaged a global network of alopecia experts. More endorsements are currently being formalised and we would be delighted to receive further endorsements from national and international organisations. Please contact us if you are considering this so that we can recognise this support on our website and share patient information leaflets.
SECURE-Alopecia has been funded by the Irish not-for-profit company, NISR (National and International Skin Registry Solutions).
Questions may be directed to the SECURE-Alopecia Steering Committee: COVID.Alopecia@nisrsolutions.com
American Academy of Dermatology COVID-19 Data Registry:
Aims to understand dermatologic manifestations of coronavirus
The purpose is to gather information from all health care providers taking care of:
- COVID-19 patients who develop dermatologic manifestations, or
- Dermatology patients with an existing condition who then develop COVID-19
You may access the registry on the AAD website at www.aad.org/covidregistry
It is important to note that a COVID-19 patient does not have to have a positive confirmed test to be entered into the registry, as entrants will be able to specify if the case was based on clinical suspicion or on a confirmed test. Also, physicians from any specialty may enter the registry, and we are inviting international physicians to participate as well.
The form takes only 5 minutes to complete!