Author:
Marks Madeline E.,Botta Ramya Krishna,Abe Riichiro,Beachkofsky Thomas M.,Boothman Isabelle,Carleton Bruce C.,Chung Wen-Hung,Cibotti Ricardo R.,Dodiuk-Gad Roni P.,Grimstein Christian,Hasegawa Akito,Hoofnagle Jay H.,Hung Shuen-Iu,Kaffenberger Benjamin,Kroshinsky Daniela,Lehloenya Rannakoe J.,Martin-Pozo Michelle,Micheletti Robert G.,Mockenhaupt Maja,Nagao Keisuke,Pakala Suman,Palubinsky Amy,Pasieka Helena B.,Peter Jonathan,Pirmohamed Munir,Reyes Melissa,Saeed Hajirah N.,Shupp Jeffery,Sukasem Chonlaphat,Syu Jhih Yu,Ueta Mayumi,Zhou Li,Chang Wan-Chun,Becker Patrice,Bellon Teresa,Bonnet Kemberlee,Cavalleri Gianpiero,Chodosh James,Dewan Anna K.,Dominguez Arturo,Dong Xinzhong,Ezhkova Elena,Fuchs Esther,Goldman Jennifer,Himed Sonia,Mallal Simon,Markova Alina,McCawley Kerry,Norton Allison E.,Ostrov David,Phan Michael,Sanford Arthur,Schlundt David,Schneider Daniel,Shear Neil,Shinkai Kanade,Tkaczyk Eric,Trubiano Jason A.,Volpi Simona,Bouchard Charles S.,Divito Sherrie J.,Phillips Elizabeth J.
Abstract
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.