2023 International TSC Research Conference

2023年国际TSC研究会议

• 批准号: 10753912
• 负责人: Steven L Roberds
• 金额: $ 3.55万
• 依托单位: TUBEROUS SCLEROSIS ALLIANCE
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-01 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10753912
• 关键词: Acceleration; Address; Affect; Award; Basic Science; Brain; Brain Neoplasms; Canada; Caregivers; Clinical; Clinical Research; Clinical Trials; Collaborations; Communication; Communities; Data; Dedications; Disease; Dominant Genetic Conditions; Education; Educational workshop; Ensure; Environment; Epilepsy; FDA approved; Faculty; Feedback; Foundations; Funding; Future; Genetic; Genetic Diseases; Goals; Healthcare; Hearing; Hour; Hungary; India; Individual; Industry; International; Israel; Joints; Kidney; Kidney Neoplasms; Knowledge; Life; Lung; Lymphangioleiomyomatosis; Malignant Neoplasms; Medical; Mexico; Mutation; National Institute of Neurological Disorders and Stroke; Neurologic; Organ; Outcome; Patient advocacy; Patients; Persons; Pharmacotherapy; Phenotype; Publishing; Qualifying; Quality of life; Rare Diseases; Recommendation; Recording of previous events; Research; Research Personnel; SDZ RAD; Science; Scientist; Seizures; Shapes; Sirolimus; Skin; Skin Neoplasms; Symptoms; TSC1 gene; TSC2 gene; Thailand; Translational Research; Travel; Tuberous Sclerosis; Underrepresented Populations; Update; Work; autism spectrum disorder; autosome; career; cell growth; clinical care; data sharing; design; high risk; improved; interest; mTOR Inhibitor; mTOR inhibition; medical specialties; meetings; neuropathology; neuropsychiatric disorder; neuropsychiatry; posters; prevent; research and development; skills; symposium; tumor; tumor growth; virtual

The goals of the 2023 International TSC Research Conference are to (1) inspire new research directions by exposing trainees and researchers from outside the field and belonging to groups underrepresented in research to the latest research developments in TSC or other relevant fields, and (2) stimulate collaborative research to address unmet medical needs of those affected by TSC as well as related disorders, including epilepsy, autism, lymphangioleiomyomatosis (LAM), and rare diseases with overlapping phenotypes. TSC is an autosomal dominant genetic disorder characterized by abnormally regulated cell growth in many organs due to a mutation in either of the TSC1 or TSC2 genes. Toward the first goal, the TSC Alliance and organizing committee will (a) sponsor a half-day TSC Early Career Research Symposium the morning before the main conference begins; (b) utilize travel awards to bring trainees and junior faculty selected from submitted abstracts to the Early Career Researcher Symposium and research conference to engage with other trainees and early-stage investigators regarding issues unique to their career stage, share their data in platform and poster presentations with feedback on their science and on their presentation skills, and expose them to broader research opportunities (e.g., industry, patient advocacy) in the field of TSC and related disorders; and (c) increase the diversity of attendees by reserving half of the travel awards for scientists who belong to underrepresented groups in research, including scientists without data to present on TSC-related work. Toward the second goal, the conference will (a) assemble non-TSC-focused researchers together with TSC experts in an environment conducive to sharing data, networking, and building opportunities for future collaboration; (b) utilize breakout sessions to discuss relevant interdisciplinary topics; and (c) employ platform sessions specifically to facilitate cross-specialty understanding by combining in the same session—to the extent reasonably possible—basic, translational, and clinical research data. To ensure concepts presented differ meaningfully from previous conferences, none of the 12 invited speakers were invited speakers at the TSC Alliance-sponsored 2021 virtual or 2019 in-person International TSC Research Conferences, and only one was an invited speaker at recent conferences sponsored by the UK TSC Association and The LAM Foundation. To ensure new individuals are involved in shaping the 2023 conference, 83% (10 of 12) of the invited speakers and 25% (3 of 12) of the organizing committee did not even attend the TSC Alliance-sponsored 2021 virtual or 2019 in-person International TSC Research Conferences. To facilitate interaction of researchers with patients, an educational meeting for patients with TSC and/or caregivers will be held on Saturday in the same hotel as the research conference. The close proximity enables researchers to interact with patients at meals, and a 1-hour joint session including patients will conclude the research conference on Saturday, giving patients an opportunity to hear about key research from, and ask questions of, international TSC investigators.

2023年国际TSC研究会议的目标是（1）通过以下方式激发新的研究方向： 让来自外地的受训人员和研究人员以及属于在研究中代表性不足的群体的人员接触 了解TSC或其他相关领域的最新研究进展，以及（2）促进合作研究， 解决受TSC以及相关疾病（包括癫痫、自闭症）影响的人未满足的医疗需求， 淋巴管平滑肌瘤病（LAM）和具有重叠表型的罕见疾病。TSC是常染色体 一种显性遗传病，特征是由于突变导致许多器官的细胞生长受到不正常的调节 在TSC 1或TSC 2基因中。为了实现第一个目标，海训方案联盟和组织委员会将： 在主要会议开始前一天上午，赞助为期半天的TSC早期职业研究研讨会;（B） 利用旅行奖励将从提交的摘要中选出的学员和初级教师带到早期职业生涯 研究人员座谈会和研究会议，与其他学员和早期研究人员接触 关于他们职业生涯阶段特有的问题，在平台和海报演示中与 对他们的科学和表达技巧的反馈，并使他们获得更广泛的研究机会 (e.g.,（c）在TSC和相关疾病领域， 与会者，将旅行奖励的一半保留给属于代表性不足群体的科学家， 研究，包括科学家没有数据，目前对TSC相关的工作。为了实现第二个目标， 会议将（a）在一个环境中将非TSC重点研究人员与TSC专家聚集在一起 有利于共享数据、建立网络和为未来合作创造机会;（B）利用分组讨论 会议，讨论相关的跨学科主题;以及（c）利用平台会议专门促进 通过在同一届会议上结合跨专业的理解-在合理的可能范围内-基本， 翻译和临床研究数据。确保所呈现的概念与先前的概念有意义的不同 会议，12位受邀演讲者中没有一位是TSC联盟赞助的2021年虚拟会议的受邀演讲者 或2019年亲自参加的国际TSC研究会议，最近只有一位受邀发言人 会议由英国TSC协会和LAM基金会赞助。为了确保新成员 参与塑造2023年会议，83%（12人中的10人）的受邀演讲者和25%（12人中的3人）的 组委会甚至没有参加TSC联盟赞助的2021年虚拟或2019年的人 国际TSC研究会议。为了促进研究人员与患者的互动， TSC患者和/或护理人员的会议将于周六在研究的同一家酒店举行 会议近距离使研究人员能够在用餐时与患者互动， 包括患者在内的会议将于周六结束，让患者有机会 听取国际TSC调查人员的关键研究，并向他们提问。