NORTH AMERICAN FETAL THERAPY NETWORK BIANNUAL SCIENTIFIC MEETINGS

北美胎儿治疗网络两年一次的科学会议

• 批准号: 9035304
• 负责人: Anthony Johnson
• 金额: $ 0.6万
• 依托单位: UNIVERSITY OF TEXAS HLTH SCI CTR HOUSTON
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-04-06 至 2019-02-28
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9035304
• 关键词: Academic Medical Centers; Address; American; Area; Biometry; Canada; Caring; Chicago; Clinical; Clinical Research; Complex; Development; Disabled Persons; Economics; Educational workshop; Ethical Issues; Fetal Diseases; Fetal Therapies; Financial Support; Future; Health; Individual; Location; Medical Ethics; Medical center; Mentors; Mission; National Heart, Lung, and Blood Institute; National Institute of Child Health and Human Development; Natural History; Nature; Needs Assessment; North Carolina; Participant; Pediatric Hospitals; Peer Review; Philadelphia; Process; Protocols documentation; Rare Diseases; Research; Research Personnel; San Francisco; Therapeutic; Transportation; Travel; United States; United States National Institutes of Health; Universities; Woman; authority; cost; ethnic minority population; fetal; fetal diagnosis; fetus surgery; improved outcome; innovation; medical specialties; meetings; member; metropolitan; multidisciplinary; organizational structure; prenatal intervention; prenatal therapy; racial and ethnic; repaired; symposium; treatment center

DESCRIPTION (provided by applicant): The primary mission of the North American Fetal Therapy Network (NAFTNet) is to provide a cooperative clinical research network to study the natural history of fetal diseases and to develop therapeutic prenatal interventions to improve outcomes. NAFTNet is a voluntary association of medical centers in the United States and Canada with established expertise in fetal surgery and other forms of multidisciplinary care for complex disorders of the fetus. The network was created to address issues pertaining to fetal therapy that arose from the NIH workshop held on August 16-17, 2004, "Fetal Treatment: Needs Assessment and Future Directions," which was supported by the National Institutes of Child Health and Human Development (NICHD), the Office of Rare Diseases and the National Heart, Lung, and Blood Institute. It was recommended that a cooperative group of investigators and clinicians be formed to help set a national agenda for research, clinical progress, and ethical issues in the field. Further, it was recognized that the development of such a group would be a challenge due to the innovative and entrepreneurial nature of fetal therapy. Participants at the workshop from the Children's Hospital of Philadelphia, University of North Carolina, Vanderbilt University Medical Center and the University of San Francisco moved forward during the following year to develop the organizational structure of NAFTNet with the primary mission to create a collaborative clinical research network to study the natural history of fetal disease and develop therapeutic prenatal interventions to improve outcomes. Since the initial introductory meeting and invitation to participate in October of 2005, NAFTNet has grown from 18 to 23 major North American fetal therapy units. Participating centers have agreed to (1) a peer- review and mentoring process of submission of research protocols (2) participation and support of NAFTNet approved protocols and (3) institutional financial support. The peer-review process is coordinated in the scientific meetings with a free exchange and dissemination of ideas amongst individuals from the participating centers who are authorities in the areas of fetal diagnosis and treatment and ad hoc members representing the specialties of medical ethics and biostatistics. NAFTNet is a 501c3 organization that seeks to achieve appropriate representation of women and racial/ethnic minorities and persons with disabilities.

描述（由申请人提供）：北美胎儿治疗网络（NAFTNET）的主要任务是提供合作的临床研究网络，以研究胎儿疾病的自然历史并开发治疗性产前干预措施以改善结果。 NAFTNET是美国和加拿大医疗中心的自愿协会，在胎儿手术和其他形式的多学科护理方面具有针对胎儿复杂疾病的多学科护理的专业知识。该网络的目的是解决与2004年8月16日至17日举行的NIH研讨会有关的问题，即“胎儿治疗：需求评估和未来方向”，该机构得到了国家儿童健康与人类发展研究所（NICHD）的支持，罕见疾病办公室和国家心脏，肺部和血液研究所。建议成立一个合作的研究人员和临床医生，以帮助为该领域的研究，临床进步和道德问题制定国家议程。此外，人们认识到，由于胎儿治疗的创新性和企业家性质，这种群体的发展将是一个挑战。在费城儿童医院，北卡罗来纳大学，范德比尔特大学医学中心和旧金山大学的研讨会的参与者在次年前进，以开发NAFTNET的组织结构，主要使命是创建一个协作临床研究网络，以研究胎儿疾病的自然病史并开发治疗性培训培训介绍性介入以改善过时的介绍。自2005年10月的最初介绍会议和邀请参加，NAFTNET已从18至23个主要的北美胎儿治疗单位增长到23个。参与中心已同意（1）提交研究方案的同行审查和指导过程（2）参与和支持NAFTNET批准的协议以及（3）机构财务支持。同行评审过程在科学会议上进行了协调，并在参与中心的个人中自由交流和传播思想，这些人是胎儿诊断和治疗领域的当局以及代表医学伦理学和生物统计学专业的临时成员。 NAFTNET是一个501C3组织，旨在实现妇女和种族/族裔少数民族和残疾人的适当代表。