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When toxic substances penetrate the human body, they disseminate to various tissues, undergoing metabolic changes. This process yields reactive metabolites that may covalently bind with specific target molecules, resulting in toxicity.
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A Standardized Procedure of Dressing Management for Toxic Epidermal Necrolysis
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Updates in SJS/TEN: collaboration, innovation, and community.

Madeline E Marks1, Ramya Krishna Botta1, Riichiro Abe2

  • 1Center for Drug Interactions and Immunology, Division of Infectious Disease, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, United States.

Frontiers in Medicine
|October 30, 2023
PubMed
Summary

Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN) is a severe drug reaction. The SJS/TEN 2021 meeting convened experts and survivors to advance research and community support for this rare disease.

Keywords:
HLA genotypingSCORTENStevens-Johnson SyndromeToxic Epidermal Necrolysisbody surface areaelectronic medical recordpharmacogenomicssevere adverse cutaneous drug reactions

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Area of Science:

  • Multidisciplinary research
  • Rare disease research
  • Patient advocacy

Background:

  • Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN) is a severe, often drug-induced condition with high mortality.
  • Incidence rates are 1-5/million in the US, higher globally.
  • Challenges exist in research coordination for improved patient outcomes.

Purpose of the Study:

  • To brainstorm strategies for an international SJS/TEN research network.
  • To bridge the gap between scientific research and community needs.
  • To identify unmet research and clinical needs in SJS/TEN.

Main Methods:

  • The SJS/TEN 2021 virtual meeting convened 428 international scientists.
  • A community workshop included 140 SJS/TEN survivors and family members.
  • Discussions focused on eight key themes relevant to SJS/TEN patient care and research.

Main Results:

  • The meeting fostered collaboration between scientists and the SJS/TEN community.
  • Key areas for future research and clinical intervention were identified.
  • Updates on SJS/TEN mechanisms, complications, and treatments were shared.

Conclusions:

  • Continued growth of an international SJS/TEN research network is crucial.
  • Addressing patient-identified needs in mental health, eye care, and long-term complications is essential.
  • Further research is needed to understand and manage SJS/TEN, including non-drug induced cases and vaccine-related concerns.