학술논문
Updates in SJS/TEN: collaboration, innovation, and community
Document Type
article
Author
Madeline E. Marks; Ramya Krishna Botta; Riichiro Abe; Thomas M. Beachkofsky; Isabelle Boothman; Bruce C. Carleton; Wen-Hung Chung; Ricardo R. Cibotti; Roni P. Dodiuk-Gad; Christian Grimstein; Akito Hasegawa; Jay H. Hoofnagle; Shuen-Iu Hung; Benjamin Kaffenberger; Daniela Kroshinsky; Rannakoe J. Lehloenya; Michelle Martin-Pozo; Robert G. Micheletti; Maja Mockenhaupt; Keisuke Nagao; Suman Pakala; Amy Palubinsky; Helena B. Pasieka; Jonathan Peter; Munir Pirmohamed; Melissa Reyes; Hajirah N. Saeed; Jeffery Shupp; Chonlaphat Sukasem; Jhih Yu Syu; Mayumi Ueta; Li Zhou; Wan-Chun Chang; Patrice Becker; Teresa Bellon; Kemberlee Bonnet; Gianpiero Cavalleri; James Chodosh; Anna K. Dewan; Arturo Dominguez; Xinzhong Dong; Elena Ezhkova; Esther Fuchs; Jennifer Goldman; Sonia Himed; Simon Mallal; Alina Markova; Kerry McCawley; Allison E. Norton; David Ostrov; Michael Phan; Arthur Sanford; David Schlundt; Daniel Schneider; Neil Shear; Kanade Shinkai; Eric Tkaczyk; Jason A. Trubiano; Simona Volpi; Charles S. Bouchard; Sherrie J. Divito; Elizabeth J. Phillips
Source
Frontiers in Medicine, Vol 10 (2023)
Subject
Language
English
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.