Til alle medlemmer i NFDV,
Videresender mail fra ILDS ,
Katarina Zak Stangeland
Dear Friends and Colleagues,
You might be aware that several international registries have recently been set up to study how COVID-19 impacts on skin diseases and how systemic immuno-modulatory therapies influence the COVID-19 outcome in patients with inflammatory dermatological conditions
The ILDS strongly supports these endeavours, and we would be grateful if you could forward the information below to your members to ensure the international dermatology community is aware of these projects and can contribute through uploading patient data.
Dermatologic Manifestations of COVID-19, and existing dermatologic conditions in the setting of COVID-19
The International Dermatology COVID-19 Registry, in collaboration with the American Academy of Dermatology and the ILDS, captures healthcare provider entered cases. It focuses on a) dermatologic manifestations of COVID-19 and b) a wide range of existing dermatologic conditions in patients that then develop COVID-19. Cases can either be clinically suspected or laboratory confirmed COVID. The registry does not contain any protected health information (PHI) and has been reviewed as exempt by Massachusetts General Hospital IRB. Entries from any country and from any specialty are encouraged.
Psoriasis (PsoPROTECT registry)
PsoPROTECT is a new global registry established to assess outcomes of COVID-19 in patients with psoriasis. It operates in collaboration with other dermatology COVID registries and international organisations including the International Psoriasis Council, International Federation of Psoriasis Associations, Global Psoriasis Atlas, ILDS, ESDR, EADV, SPIN and EDF. Entering cases of psoriasis with suspected or confirmed COVID-19 via the simple online case report forms is both quick and easy and can be done during a virtual consultation. All data are de-identified. The information provided will rapidly improve our understanding of how factors such as systemic immunomodulatory therapies, comorbidities and disease activity affect outcomes of COVID-19 in psoriasis. Regular open-access summaries of reported cases will be provided online.
Atopic Dermatitis (SECURE-AD registry)
The SECURE-AD registry, in collaboration with the International Society for Atopic Dermatitis, the International Eczema Council, the European Taskforce for Atopic Dermatitis, SPIN, EDEN, the EADV and the ILDS, collects de-identified data of atopic dermatitis (AD) patients with a confirmed Covid-19 infection episode. The registry collects data of all AD patients who were Covid-19 infected, including those on systemic immuno-modulatory medication. The SECURE-AD data entry platform is closely aligned to PsoProtect and other inflammatory disease registries to allow comparative analyses. Like the other registries, SECURE-AD only collects retrospectively entered anonymized patient data and has therefore been exempt from Research Ethics Committee review.
With the collaboration of the international dermatology community, we will be able to define the impact of COVID-19 on our patients, and we are very grateful for your support.
With best wishes,
COVID-19: Please note that the ILDS Office is closed. The ILDS Secretariat will be working from home indefinitely and are available during our usual working hours. Please contact us via email during this time. Thank you for your understanding.