Stevens-Johnson Syndrome/Toxic Epidural Necrolysis 2017: Building Multidisciplinary Networks to Drive Science and Translation

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Project Summary Stevens-Johnson syndrome/toxic epidermal necrolysis (SJS/TEN) an immunologically-mediated disease that is usually drug-induced, is rare (estimated incidence 1-3/1,000,000) but has a high collective burden. It is the severest of cutaneous adverse drugs reactions, often with >30% mortality and significant short and long-term morbidity. Advancement in SJS/TEN research, prevention and clinical care within the United States and internationally requires considerable coordination of multiple disciplines such as critical care, surgery, dermatology, ophthalmology,clinical pharmacology, epidemiology, regulatory science, informatics, immunology, genetics, skin biology and other areas of basic science. Significant progress was achieved through a two-day workshop organized by the NIH and led by the NHGRI in collaboration with the FDA in March 2015 which involved 30 established SJS/TEN researchers to set priorities. There is currently no ongoing contingency group or conference dedicated to SJS/TEN that would allow a multidisciplinary group of scientists and clinicians to engage at a single meeting. This proposal seeks support for “Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis 2017: Building Multidisciplinary Networks to Drive Science & Translation” to address this unmet need. The meeting will take place March 2, 2017 immediately preceding the American Academy of Dermatology meeting (March 3-6, 2017) in Orlando, Florida. The program will attract approximately 200 attendees and will encourage new investigators, trainees, women and minorities across multiple scientific and clinical disciplines, patients and patient advocacy groups. The one-day program will include presentations and involvement from more than 20 domestic and international experts both within the area of SJS/TEN or in scientific disciplines that have much to contribute to the advancement of SJS/TEN. The program will include a variety of presentation formats including keynote presentations, round table discussions and a poster session. An organizing committee has been assembled that has outstanding national and international representation and includes women, minorities, new investigators, a trainee and an SJS foundation member. This meeting will serve to 1) Create networks; 2) Prioritize research goals and unanswered questions; 3) Provide mentorship for new investigators and trainees; 4) Assemble key researchers for presentation of cutting edge research; and 5) Address potential barriers to short and long-term progress in SJS/TEN research. It is anticipated that an important outcome of this meeting will be the creation of a synergistic global network of researchers that will have a durable and productive collaborative relationship. The proceedings of this meeting will be disseminated through web-recording and a peer-reviewed publication. Consistent with the mission of the NIAMS and NIH this meeting will successfully assemble key researchers established or doing work of relevance to this severe life-threatening cutaneous adverse drug reaction for dissemination, education, translation and fuel significant progress in defining causes, treatment and prevention of SJS/TEN that will significantly advance human health.