Browsing by Author "Volpi S."

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    Updates in SJS/TEN: collaboration, innovation, and community
    (2023-01-01) Marks M.E.; Botta R.K.; Abe R.; Beachkofsky T.M.; Boothman I.; Carleton B.C.; Chung W.H.; Cibotti R.R.; Dodiuk-Gad R.P.; Grimstein C.; Hasegawa A.; Hoofnagle J.H.; Hung S.I.; Kaffenberger B.; Kroshinsky D.; Lehloenya R.J.; Martin-Pozo M.; Micheletti R.G.; Mockenhaupt M.; Nagao K.; Pakala S.; Palubinsky A.; Pasieka H.B.; Peter J.; Pirmohamed M.; Reyes M.; Saeed H.N.; Shupp J.; Sukasem C.; Syu J.Y.; Ueta M.; Zhou L.; Chang W.C.; Becker P.; Bellon T.; Bonnet K.; Cavalleri G.; Chodosh J.; Dewan A.K.; Dominguez A.; Dong X.; Ezhkova E.; Fuchs E.; Goldman J.; Himed S.; Mallal S.; Markova A.; McCawley K.; Norton A.E.; Ostrov D.; Phan M.; Sanford A.; Schlundt D.; Schneider D.; Shear N.; Shinkai K.; Tkaczyk E.; Trubiano J.A.; Volpi S.; Bouchard C.S.; Divito S.J.; Phillips E.J.; Mahidol University
    Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN) is a predominantly drug-induced disease, with a mortality rate of 15–20%, that engages the expertise of multiple disciplines: dermatology, allergy, immunology, clinical pharmacology, burn surgery, ophthalmology, urogynecology, and psychiatry. SJS/TEN has an incidence of 1–5/million persons per year in the United States, with even higher rates globally. One of the challenges of SJS/TEN has been developing the research infrastructure and coordination to answer questions capable of transforming clinical care and leading to improved patient outcomes. SJS/TEN 2021, the third research meeting of its kind, was held as a virtual meeting on August 28–29, 2021. The meeting brought together 428 international scientists, in addition to a community of 140 SJS/TEN survivors and family members. The goal of the meeting was to brainstorm strategies to support the continued growth of an international SJS/TEN research network, bridging science and the community. The community workshop section of the meeting focused on eight primary themes: mental health, eye care, SJS/TEN in children, non-drug induced SJS/TEN, long-term health complications, new advances in mechanisms and basic science, managing long-term scarring, considerations for skin of color, and COVID-19 vaccines. The meeting featured several important updates and identified areas of unmet research and clinical need that will be highlighted in this white paper.