2023 International TSC Research Conference

2023年国际TSC研究会议

基本信息

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
项目类别：
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

项目摘要

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暴露来自领域外以及属于研究中代表性不足的群体的受训者和研究人员了解 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 及相关疾病（包括癫痫、自闭症、淋巴管肌瘤病 (LAM) 和具有重叠表型的罕见疾病是一种常染色体。显性遗传疾病，其特征是由于突变导致许多器官中的细胞生长异常调节为了实现第一个目标，TSC 联盟和组委会将 (a) 在主会议开始前的早上赞助为期半天的 TSC 早期职业研究研讨会；旅行奖励，将从提交的摘要中选出的实习生和初级教师带入早期职业生涯研究人员研讨会和研究会议，与其他学员和早期研究人员进行交流关于他们职业阶段特有的问题，在平台和海报演示中分享他们的数据对他们的科学和演讲技巧的反馈，让他们接触到更广泛的研究机会（例如，行业、患者倡导）在 TSC 和相关疾病领域；以及 (c) 增加多样性；为属于代表性不足群体的科学家保留一半的旅行奖励研究，包括没有数据来展示 TSC 相关工作的科学家。会议将 (a) 将非 TSC 重点研究人员与 TSC 专家聚集在一个环境中 (b) 利用有利于共享数据网络并为未来合作创造机会的突破；讨论相关跨学科主题的会议；以及（c）专门利用平台会议来促进通过在同一课程中结合（在合理可能的范围内）基本的跨专业理解，确保所提出的概念与以前的有意义的不同。会议中，12 位受邀演讲者中没有一位是 TSC 联盟主办的 2021 年虚拟会议的受邀演讲者或 2019 年现场国际 TSC 研究会议，并且最近只有一位受邀演讲者由英国 TSC 协会和 LAM 基金会主办的会议，以确保新人能够参与其中。 83%（12 人中的 10 人）的受邀演讲者和 25%（12 人中的 3 人）参与了 2023 年会议的制定组委会甚至没有参加 TSC 联盟赞助的 2021 年虚拟会议或 2019 年现场会议国际 TSC 研究会议是为了促进研究人员与患者的互动。 TSC 患者和/或护理人员会议将于周六在研究所在的同一家酒店举行近距离的会议使研究人员能够在用餐时与患者进行互动，并进行 1 小时的联合交流。包括患者在内的会议将于周六结束研究会议，让患者有机会聆听国际 TSC 研究人员的重要研究并向其提问。