25th Annual National Marfan Foundation Conference

第25届全国马凡基金会年度会议

• 批准号: 7748063
• 负责人: Heidi Maria Connolly
• 金额: $ 2.8万
• 依托单位: MAYO CLINIC ROCHESTER
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-07-01 至 2010-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7748063
• 关键词: Adrenergic beta-Antagonists; Affect; Aneurysm; Angiotensin II Receptor; Atenolol; Cardiovascular system; Child; Clinic; Clinical Data; Collaborations; Diagnostic; Disease; Dissection; Education; Educational workshop; Enrollment; Event; Family; Foundations; Individual; Losartan; Marfan Syndrome; Medical; Minnesota; Mutation; Participant; Patients; Physicians; Registries; Research; Sampling; Site; Specialist; Support Groups; Teenagers; Testing; Thoracic Aortic Aneurysm; abstracting; cardiovascular risk factor; eligible participant; health care quality; meetings; member; programs; symposium

DESCRIPTION (provided by applicant): The 25th Annual Conference on Marfan Syndrome and Related Disorders will take place August 6-9, 2009 at Mayo Clinic in Rochester Minnesota in collaboration with the National Marfan Foundation (NMF). The conference is a fully-integrated four-day event that includes more than 70 workshops, support groups and educational programs for people affected with Marfan syndrome and related disorders and their families; a CME program for medical professionals; concurrent programs for children and teens; and a formal meeting of the NMF Professional Advisory Board (PAB), the nation's leading specialists in the disorder, to discuss the latest advancements in research, treatment, and diagnostic criteria. In addition, Mayo Clinic will host a free clinic where conference participants will receive on-site medical testing and assessment by PAB members, Mayo specialists and invited guest physicians. Mayo Clinic is an enrollment site for the trial of Beta Blocker Therapy (atenolol) vs. Angiotensin II Receptor Blocker Therapy (losartan) in Individuals with Marfan Syndrome. Information on the trial will be available at the conference for consumers and medical professionals. The NIH-sponsored National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions (GenTAC) will also be on-site to enroll eligible participants in a registry to collect clinical data and samples on patients with aneurysms and dissections that are caused by genetic alterations. (End of Abstract)

描述（由申请人提供）： 第25届MARFAN综合征和相关疾病会议将于2009年8月6日至9日在明尼苏达州罗切斯特的Mayo诊所与国家Marfan基金会（NMF）合作。该会议是一个完全融合的为期四天的活动，其中包括70多个研讨会，支持小组和教育计划，适合患有Marfan综合症及其相关疾病及其家人的人们；医学专业人员的CME计划；同时针对儿童和青少年的计划；以及该疾病领域的主要专家NMF专业顾问委员会（PAB）的正式会议，讨论了研究，治疗和诊断标准的最新进步。此外，梅奥诊所还将举办一家免费诊所，会议参​​与者将接受PAB成员，Mayo专家和受邀客座医生的现场医疗测试和评估。 Mayo Clinic是在Marfan综合征患者中与血管紧张素II受体阻滞剂治疗（Losartan）试验的β受体疗法试验（Atenolol）试验的入学场所。该试验的信息将在会议上为消费者和医疗专业人员提供。 NIH赞助的遗传触发胸动脉瘤和心血管疾病（GENTAC）的国家注册处也将在现场让符合条件的参与者参与注册表，以收集临床数据和针对患有遗传替代引起的动脉瘤和dissections的患者的样本。 （抽象的结尾）