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届马凡氏综合征及相关疾病年会将于2009年8月6日至9日在明尼苏达州罗切斯特的马约诊所与国家马凡氏基金会（NMF）合作举行。该会议是一个完全整合的为期四天的活动，包括70多个研讨会，支持小组和受马凡氏综合征和相关疾病影响的人及其家庭的教育计划;医疗专业人员的CME计划;儿童和青少年的并行计划;和NMF专业咨询委员会（PAB）的正式会议，全国领先的专家在混乱，讨论研究、治疗和诊断标准的最新进展。此外，马约诊所将举办免费诊所，与会者将在现场接受PAB成员、马约专家和特邀客座医生的医学测试和评估。马约诊所是马凡氏综合征患者中β受体阻滞剂治疗（阿替洛尔）与血管紧张素II受体阻滞剂治疗（氯沙坦）试验的入组中心。有关试验的信息将在会议上提供给消费者和医疗专业人员。NIH赞助的国家遗传触发胸主动脉瘤和心血管疾病登记处（GenTAC）也将在现场招募合格的参与者参加登记，以收集由遗传改变引起的动脉瘤和夹层患者的临床数据和样本。 (End摘要）