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Updates in SJS/TEN: collaboration, innovation, and community
Journal article   Open access   Peer reviewed

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, …
Frontiers in medicine, Vol.10, 1213889
2023
PMID: 37901413
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Published (Version of Record) Open Access CC BY V4.0

Abstract

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

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UN Sustainable Development Goals (SDGs)

This output has contributed to the advancement of the following goals:

#3 Good Health and Well-Being

Source: SDGs in the Output

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