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

史蒂文斯-约翰逊综合症/中毒性硬膜外坏死松解术 2017：建立多学科网络以推动科学和翻译

• 批准号: 9261224
• 负责人: Elizabeth Phillips
• 金额: $ 4.3万
• 依托单位: VANDERBILT UNIVERSITY MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-02-01 至 2018-01-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9261224
• 关键词: Academy; Address; American; Applications Grants; Area; Basic Science; Biology; Burn injury; Carbamazepine; Clinical; Clinical Pharmacology; Collaborations; Critical Care; Cutaneous; Dermatologic; Dermatologist; Dermatology; Discipline; Disease; Drug usage; Education; Educational workshop; Epidemiology; Florida; Foundations; Future; Genetic; Goals; HLA-B Antigens; Health; Human; Immunologics; Immunologist; Immunology; Incidence; Individual; Informatics; Institutes; International; Internet; Life; Manuscripts; Mediating; Mentors; Mentorship; Minority; Mission; Morbidity - disease rate; National Human Genome Research Institute; National Institute of Arthritis and Musculoskeletal and Skin Diseases; Operative Surgical Procedures; Ophthalmologist; Ophthalmology; Outcome; Patient Care; Patient-Focused Outcomes; Patients; Peer Review; Pharmaceutical Preparations; Population; Prevention; Publications; Publishing Peer Reviews; Rare Diseases; Reaction; Recruitment Activity; Research; Research Personnel; Research Priority; Risk; Risk Factors; Science; Scientist; Skin; Specialist; Stevens-Johnson Syndrome; Toxic Epidermal Necrolysis; Translations; United States; United States National Institutes of Health; Woman; Work; career; catalyst; clinical care; experience; improved; interdisciplinary approach; meetings; member; mortality; multidisciplinary; patient advocacy group; posters; programs; screening; skills; southeast Asian; success; symposium

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.

项目概要 史蒂文斯-约翰逊综合征/中毒性表皮坏死松解症 (SJS/TEN) 一种免疫介导的疾病，通常是 药物引起的，很少见（估计发病率为 1-3/1,000,000），但集体负担很高，这是最严重的。 皮肤药物不良反应，死亡率通常>30%，且短期和长期发病率显着。 美国和国际上 SJS/TEN 研究、预防和临床护理的进步需要 重症监护、外科、皮肤科、眼科、临床等多学科的高度协调 药理学、流行病学、监管科学、信息学、免疫学、遗传学、皮肤生物学等领域 NIH 组织、NHGRI 领导的为期两天的研讨会取得了重大进展。 2015 年 3 月与 FDA 合作，由 30 名 SJS/TEN 研究人员参与确定优先事项。 目前还没有专门针对 SJS/TEN 的持续应急小组或会议来允许多学科小组 该提案寻求“史蒂文斯-约翰逊”的支持。 综合征/中毒性表皮坏死松解症 2017：建立多学科网络以推动科学与翻译” 会议将于 2017 年 3 月 2 日在美国科学院会议之前举行。 皮肤病学会议（2017 年 3 月 3 日至 6 日）在佛罗里达州奥兰多举行。该计划将吸引约 200 名与会者。 将鼓励跨多个科学和临床学科的新研究人员、受训人员、妇女和少数族裔， 为期一天的计划将包括更多患者的演讲和参与。 超过 20 位国内外 SJS/TEN 领域或科学学科领域的专家 为 SJS/TEN 的进步做出贡献 该计划将包括各种演示形式，包括主题演讲。 演讲、圆桌讨论和海报会议已经成立。 杰出的国家和国际代表性，包括妇女、少数族裔、新调查员、实习生和 SJS 基金会成员。这次会议将有助于 1) 创建网络 2) 确定研究目标和未解决问题的优先顺序； 问题； 3) 为新研究者和受训者提供指导； 4) 召集关键研究人员进行演示； 前沿研究；以及 5) 解决 SJS/TEN 研究短期和长期进展的潜在障碍。 预计本次会议的一个重要成果将是建立一个协同的全球研究人员网络 将传播本次会议的记录。 通过网络记录和同行评审出版物，这与 NIAMS 和 NIH 的使命一致。 会议将成功聚集已建立或正在从事与这一严重威胁​​生命的相关工作的主要研究人员 皮肤药物不良反应的传播、教育、翻译并推动在定义方面取得重大进展 SJS/TEN 的病因、治疗和预防将显着促进人类健康。