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. TITLE=Updates in SJS/TEN: collaboration, innovation, and community JOURNAL=Frontiers in Medicine VOLUME=10 YEAR=2023 URL=https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2023.1213889 DOI=10.3389/fmed.2023.1213889 ISSN=2296-858X 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.