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

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.