Stevens-Johnson syndrome/toxic epidermal necrolysis (SJS/TEN) is an immunologically-mediated, and usually drug-induced disease that although rare has a high collective burden. SJS/TEN is well recognized as an acute life-threatening disease; however, the high short and long-term morbidity and mortality is also a significant burden on patients, their families and society, and impairs safe and effective drug development. SJS/TEN is the severest of drug-induced diseases that involves skin necrosis, mucous membrane involvement including ocular surface disease that leads to sight impairment. Although multiple disciplines in addition to dermatology are involved in the research and care of SJS/TEN, national and international coordination to maximize research efforts and networking has been challenging. On March 2, 2017, the first of such meetings Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis 2017: Building Multidisciplinary Networks to Drive Science & Translation? immediately preceded the American Academy of Dermatology meeting in Orlando Florida. This meeting was supported by an R13 research grant from the NIAMS with contributions from other NIH institutes and the FDA. It attracted 142 participants, including 30 trainees who presented scientific posters. It was successful in creating and coordinating research networks across disciplines such as dermatology, surgery, ophthalmology, urogynecology, immunology, genetics, pharmacology, regulatory science and mental health. In addition, it encouraged community and patient participation, and forged durable links with SJS advocates, patients and families affected by SJS/TEN. A white paper, now published from this meeting, highlights the opportunities for future collaborative research to fuel prevention, earlier diagnosis and effective treatment. Building on the success of the 2017 meeting, this proposal seeks support for SJS/TEN 2019: from Science to translation, that will take place in Vancouver, Canada April 26 and 27, 2019 immediately preceding the Annual Meeting of the Association for Research in Vision and Ophthalmology (ARVO) meeting. It is anticipated that the 2019 meeting will attract up to 150 attendees and like the 2017 meeting will encourage participation of new investigators, trainees, women and minorities across multiple scientific and clinical disciplines, SJS/TEN survivors, their families and community advocacy groups. The program will span 1.5-days and will include short cutting-edge presentations, interactive discussions and day 2 breakout sessions, to identify key research priorities and future directions. A trainee poster session will again be featured on day 1 that will foster mentorship and career development. The 2019 meeting will aim to 1) Prioritize research goals and build functional research teams; 2) Provide a mentorship network for new investigators; 3) Provide updates on world class research from internal and external stakeholders relevant to the advancement of SJS/TEN science; 4) Engage patients, families, support and advocacy groups with the scientific community. The proceedings of the 2019 meeting will again be widely disseminated through web-recording and a peer-reviewed publication.
Stevens-Johnson Syndrome/Toxic epidermal necrolysis (SJS/TEN) is a life-threatening cutaneous adverse drug reaction that is associated with significant mortality and short and long- term morbidity. The SJS/TEN 2019 meeting will build on the success of SJS/TEN 2017 to foster the growth of durable multidisciplinary research networks, provide a supportive mentorship environment for new investigators, provide cutting edge updates on SJS/TEN science, fuel engagement and build relationships between scientists and SJS/TEN patients, families and advocates, and prioritize future SJS/TEN research needs.
