# Stevens-Johnson syndrome/toxic epidermal necrolysis 2021: Collaboration, Innovation and Community

> **NIH NIH R13** · VANDERBILT UNIVERSITY MEDICAL CENTER · 2021 · $32,546

## Abstract

Project Summary
Stevens-Johnson syndrome and toxic epidermal necrolysis (SJS/TEN) is an immunologically-mediated, severe
disease across a spectrum of severity that is drug-induced disease in more than 80% of adults.1 It is clinically
defined by separation and necrosis of skin and mucosal surfaces and the mortality in immunocompromised and
elderly adults is up to 50%.2 Although there have been many research advances including strong HLA
associations with drug-induced SJS/TEN that have driven preventive efforts, there are currently several
research, clinical and psychosocial gaps that impact the ability to optimally prevent, diagnosis and treat SJS/TEN
across diverse populations.3-6 Patients are often left with long-term disabilities that in particular impact their vision
and general quality of life and leave them with restricted options to use drugs integral to their care in the future.4,7,8
SJS/TEN is severe but uncommon and requires a coordinated research effort across multiple disciplines
including dermatologists, burn and critical care specialists, ophthalmologists, allergists and immunologists,
pharmacists, pharmacologists and mental health specialists. Such multidisciplinary networking between multiple
disciplines and a community of SJS survivors and their families was also an integral part of the success of
SJS/TEN 2017 and SJS/TEN 2019. The meeting “Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis
2021: Collaboration, Innovation and Community” to be held May 8 and 9, 2021 immediately following the
Society for Investigative Dermatology meeting will build off the success of the SJS/TEN 2017 and 2019
meetings that included more than 140 participants representing multiple clinical and research disciplines and
SJS survivors and resulted in three publications and several collaborations and networks.4,7,8 It is anticipated
that the 2021 meeting that will take place in Chicago, at the Loyola University Medical Center, will attract up to
200 attendees, encouraging the participation of new investigators, trainees, women and minorities across
multiple scientific and clinical disciplines and SJS survivors and community advocates. The 2021 meeting will
aim to 1) Foster continued brainstorming and growth of a collaborative and interactive research network; 2)
Provide an integrative mentorship model for investigators at all levels; 3) Showcase cutting edge, innovative,
translational research relevant to advancing the science and clinical care of SJS/TEN and 4) Utilize SJS/TEN
community engagement to identify unmet clinical, scientific and psychosocial needs. Measurable outcomes
resulting from this meeting include expansion of cross-disciplinary research networks leading to grant funding,
publications and scientific translation, career development of new investigators, and ongoing engagement
between the scientific community and the SJS community. This meeting aligns with the broad mission of the
NIH and National Institute of Arthritis and Musculoskelet...

## Key facts

- **NIH application ID:** 10142828
- **Project number:** 1R13AR078623-01
- **Recipient organization:** VANDERBILT UNIVERSITY MEDICAL CENTER
- **Principal Investigator:** Elizabeth Phillips
- **Activity code:** R13 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $32,546
- **Award type:** 1
- **Project period:** 2021-05-15 → 2022-10-14

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10142828

## Citation

> US National Institutes of Health, RePORTER application 10142828, Stevens-Johnson syndrome/toxic epidermal necrolysis 2021: Collaboration, Innovation and Community (1R13AR078623-01). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10142828. Licensed CC0.

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