Royal College of Surgeons in Ireland
Updates in SJS TEN.....pdf (1.43 MB)

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

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journal contribution
posted on 2024-02-09, 14:27 authored by Madeline E Marks, Isabelle BoothmanIsabelle Boothman, Gianpiero CavalleriGianpiero Cavalleri, Elizabeth J Phillips
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.


Vanderbilt University Medical Center Department of Medicine, the University of Ottawa Department of Medicine

Canadian Dermatology Foundation

National Institutes of Health (R01HG010863, R01AI152183, and U01AI154659)

National Health and Medical Research Council of Australia



The original article is available at

Published Citation

Marks ME. et al. Updates in SJS/TEN: collaboration, innovation, and community. Front Med (Lausanne). 2023;10:1213889.

Publication Date

11 October 2023

PubMed ID



  • School of Pharmacy and Biomolecular Sciences

Research Area

  • Neurological and Psychiatric Disorders


Frontiers Media SA


  • Published Version (Version of Record)