Updates in SJS/TEN: collaboration, innovation, and community

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 NagaoSuman 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

Research output: Contribution to journalReview articlepeer-review

6 Scopus citations

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.

Original languageEnglish (US)
Article number1213889
JournalFrontiers in Medicine
Volume10
DOIs
StatePublished - 2023

Keywords

  • HLA genotyping
  • SCORTEN
  • Stevens-Johnson Syndrome
  • Toxic Epidermal Necrolysis
  • body surface area
  • electronic medical record
  • pharmacogenomics
  • severe adverse cutaneous drug reactions

ASJC Scopus subject areas

  • General Medicine

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