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

NIH RePORTER · NIH · R13 · $32,546 · view on reporter.nih.gov ↗

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
VANDERBILT UNIVERSITY MEDICAL CENTER
Principal Investigator
Elizabeth Phillips
Activity code
R13
Funding institute
NIH
Fiscal year
2021
Award amount
$32,546
Award type
1
Project period
2021-05-15 → 2022-10-14