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.

项目摘要 史蒂文斯 - 约翰逊综合征/有毒表皮坏死溶解（SJS/10）一种免疫介导的疾病，通常是 药物引起的，很少见（估计事件为1-3/1,000,000），但集体燃烧很高。这是最严重的 皮肤不良药物反应通常具有> 30％的死亡率和显着的短期和长期发病率。 美国和国际上的SJS/十项研究，预防和临床护理的进步需要 多个学科的大量协调，例如重症监护，手术，皮肤病学，眼科，临床 药理学，流行病学，监管科学，信息信息，免疫学，遗传学，皮肤生物学和其他领域 基础科学。通过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，涉及30名SJS/10名研究人员确定优先级。有 目前尚无专门用于SJS/TEN的持续应急小组或会议，该会议将允许多学科组 科学家和临床医生参加一次会议。该建议寻求支持“史蒂文斯 - 约翰逊 2017年综合征/有毒表皮坏死：建立多学科网络以推动科学和翻译“ 解决这个未满足的需求。会议将于2017年3月2日在美国学院之前举行 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。该计划将吸引大约200名与会者 将鼓励多个科学和临床学科的新调查员，受训者，妇女和少数民族， 患者和患者倡导组。为期一天的计划将包括更多的演讲和参与 SJS/10或科学学科领域内的20位国内外专家 SJS/10的进步贡献。该计划将包括各种演示格式，包括主题演讲 演示文稿，圆桌讨论和海报会议。一个组织委员会已经组建了 杰出的国家和国际代表，包括妇女，少数民族，新调查员，学员和 SJS基金会成员。这次会议将用于1）创建网络； 2）优先考虑研究目标和未解决的问题 问题; 3）为新的调查员和受训者提供精神训练； 4）组装关键研究人员以介绍 尖端研究； 5）解决SJS/十项研究中短期和长期进展的潜在障碍。这是 预计这次会议的重要结果将是建立一个协同的全球研究人员网络 这将具有持久的产品协作关系。这次会议的诉讼将被传播 通过网络录制和同行评审的出版物。与Niams的任务一致，这是NIH 会议将成功地组装关键的研究人员建立或与这种严重的威胁生命有关的工作 皮肤不良药物反应用于传播，教育，翻译和燃料定义的重大进展 SJS/十的原因，治疗和预防将大大改善人类健康。