A patient registry called “SECURE-Alopecia” has been developed by respected hair researchers, Prof. Rod Sinclair and Dr. Dmitri Wall, to record COVID-19 positive alopecia patient outcomes.
Please review the message below and considering submitting cases, as appropriate.
Questions may be directed to the SECURE-Alopecia Steering Committee: [email protected]
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), and 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) and 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).