The 10th Annual Angioma Alliance Cerebral Cavernous Malformations (CCM) Scientific Meeting

第十届血管瘤联盟脑海绵状血管瘤 (CCM) 年度科学会议

• 批准号: 8837838
• 负责人: Amy Lee Akers
• 金额: $ 1万
• 依托单位: ANGIOMA ALLIANCE
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-09-30 至 2015-09-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8837838
• 关键词: Academia; Address; Advocacy; Affect; Animal Experimentation; Anniversary; Area; Biological; Blood Vessels; Brain; Brain Diseases; Brain hemorrhage; CCM1 gene; Caenorhabditis elegans; Cavernous Hemangioma; Cavernous Malformation; Cerebrum; Cessation of life; Characteristics; Clinical; Clinical Research; Clinical Trials; Collaborations; Commit; Communities; Consultations; DNA; DNA Library; Data; Development; Disease; Drosophila genus; Educational workshop; Etiology; Excision; Financial Support; Funding; Future; Generations; Genetic; Government Agencies; Headache; Hemangioma; Hemorrhage; Individual; Industry; Institutional Review Boards; Interdisciplinary Study; International; Internet; Lesion; Medicine; Mission; Modeling; Molecular; Motivation; Mus; Mutation; Nature; Neuraxis; Neurologic; Operative Surgical Procedures; Participant; Pathway interactions; Patients; Pharmaceutical Preparations; Pharmacological Treatment; Physicians; Recording of previous events; Research; Research Personnel; Research Project Grants; Rho-associated kinase; Sampling; Schedule; Science; Seizures; Series; Signal Transduction; Site; Spinal Cord; Structure; Surgeon; Symptoms; Tight Junctions; Tissue Banking; Tissue Banks; Tissue Sample; Training; Translating; Vascular Diseases; Writing; Zebrafish; abstracting; base; biobank; brain surgery; cohort; data sharing; empowered; field study; flexibility; innovation; meetings; multidisciplinary; novel; patient advocacy group; patient registry; pre-clinical; public health relevance; success; symposium; unpublished works

 DESCRIPTION (provided by applicant): Angioma Alliance is the Patient Advocacy Group for and by those affected by Cerebral Cavernous Malformations (CCM) - a vascular disorder with unknown disease etiology and no available pharmacological treatment. Our mission is two-fold: to support and educate the patient community and to drive research for a cure. CCM is a brain disease typified by development of vascular lesions that are multi- cavernous, thin-walled structures with inadequate tight junctions and a propensity for hemorrhage. Lesion hemorrhage can result in a variety of clinical symptoms including, most severely, hemorrhagic stroke and/or death. While the biological mechanisms for lesion development and progression continue to be elucidated and no pharmacological treatment is yet available for the patient community. The only treatment remains surgical removal of the lesion; however, a surgical option may not be suitable for all patients, particularly those with multiple and/or deep brain lesions. Facilitating research for the advancement and rapid development of a pharmacological treatment for CCM is the prime motivation for the efforts of the CCM patient community. In order to facilitate novel and collaborative research, Angioma Alliance is committed to hosting the annual CCM Scientific Meeting. This meeting brings together stakeholders from research, advocacy, and government agencies to share and discuss unpublished research in an effort to drive innovation and generate unique and multidisciplinary hypotheses. No other meeting in the world draws together the same cohort of investigators - last year's meeting included surgeons and physicians, geneticists and microbiologists, as well as animal research teams focusing on murine, zebrafish, C. elegans and Drosophila models. The strength of this meeting, and the reason attendees commit to annual attendance, is the opportunity for interactive discussions, data sharing, hypothesis generation, and collaboration. Importantly, the meeting organizers insist on the presentation of unpublished work; therefore, the CCM Scientific Meeting is often the site for first public presentation of important findings that are critical for advancing the field. The primary objective of this proposal is to host the 10th anniversary CCM Scientific Meeting. The nine-year history for this meeting series is one of success and progress in the field of CCM research, much of which can be attributed to the new collaborations initiated at the meeting series. The inaugural CCM meeting was held as an informal single-day workshop for investigators to meet face-to-face and discuss their unpublished data - the agenda was flexible and the discussions were lively. This small workshop has grown to become the premier international scientific conference for those studying any and all aspects of CCM research. The primary objectives of the 2014 CCM Scientific Meeting are: 1. To expand and continue to build upon past meeting success by focusing on new research findings from diverse investigators and facilitating interdisciplinary interactions between investigators who otherwise would not have the opportunity to meet face-to-face; and 2. To translate basic and preclinical findings to develop an inclusive, collaborative and global action plan for clinical trial efforts using a moderated exper panel discussion; and 3. To provide educational and training opportunity for junior investigators.

 描述（由适用提供）：血管瘤联盟是患者的倡导组，受到脑海绵状畸形（CCM）的患者倡导组 - 一种具有未知疾病病因的血管疾病，没有可用的药物治疗。我们的任务是两个方面：支持和教育患者社区并推动治疗研究。 CCM是一种脑部疾病，该脑部疾病的发展是发展为多细长的薄壁结构的血管病变，其紧密连接不足和出血的希望。病变出血会导致各种临床症状，包括最严重的出血性中风和/或死亡。尽管病变发育和进展的生物学机制继续被阐明，并且患者社区仍然没有药物治疗。唯一的治疗仍然是对病变的手术去除。但是，手术选择可能并不适合所有患者，尤其是患有多重和/或深脑病变的患者。促进 CCM药物治疗的进步和快速发展的研究是CCM患者社区努力的主要动机。为了促进新颖和协作研究，血管瘤联盟致力于举办年度CCM科学会议。这次会议汇集了研究，倡导和政府机构的利益相关者分享和讨论未发表的研究，以推动创新并产生独特的多学科假设。世界上没有其他会议吸引相同的研究人员 - 去年的会议包括外科医生和医生，遗传学家和微生物学家，以及专注于鼠，斑马鱼，秀丽隐杆线虫和果蝇模型的动物研究团队。这次会议的优势以及与会者参加年度出席的原因，是进行互动讨论，数据共享，假设生成和协作的机会。重要的是，会议组织者坚持提出未发表的工作；因此，CCM科学会议通常是首先的网站 公开介绍重要发现，这些发现对于推进该领域至关重要。该提案的主要目的是举办10周年CCM科学会议。该会议系列的九年历史是CCM研究领域的成功和进步之一，其中大部分可以归因于会议系列中发起的新合作。首届CCM会议是作为非正式的单日研讨会举行的，供调查人员面对面，讨论他们未发表的数据 - 议程很灵活，讨论很生动。这个小型研讨会已经成长为研究CCM研究任何方面的人的首屈一指的国际科学会议。 2014年CCM科学会议的主要目标是：1。通过关注潜水员研究人员的新研究结果并促进研究人员之间的跨学科互动，以扩大并继续建立成功的成功，否则他们将没有机会面对面对面；和2。翻译基本和临床前的发现，以制定一项包容性，协作和全球的行动计划，以使用主持的专家小组讨论来制定临床试验工作；和3。为初级调查人员提供教育和培训机会。