NORTH AMERICAN FETAL THERAPY NETWORK BIANNUAL SCIENTIFIC MEETINGS

描述（由申请人提供）：北美胎儿治疗网络（NAFTNet）的主要使命是提供一个合作临床研究网络来研究胎儿疾病的自然史并开发治疗性产前干预措施以改善结果。 NAFTNet 是一个由美国和加拿大医疗中心组成的自愿协会，在胎儿手术和针对胎儿复杂疾病的其他形式的多学科护理方面拥有成熟的专业知识。该网络的创建是为了解决 2004 年 8 月 16 日至 17 日举行的 NIH 研讨会“胎儿治疗：需求评估和未来方向”中出现的与胎儿治疗有关的问题，该研讨会得到了美国国立儿童健康和人类发展研究所 (NICHD)、罕见病办公室以及美国心肺血液研究所的支持。建议成立一个由研究人员和临床医生组成的合作小组，帮助制定该领域研究、临床进展和伦理问题的国家议程。此外，人们认识到，由于胎儿治疗的创新和创业性质，这样一个小组的发展将是一个挑战。来自费城儿童医院、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参与者在接下来的一年里继续发展 NAFTNet 的组织结构，其主要任务是创建一个协作临床研究网络，以研究胎儿疾病的自然史并开发治疗性产前干预措施以改善结果。自 2005 年 10 月首次召开介绍会并受邀参加以来，NAFTNet 的北美主要胎儿治疗单位已从 18 个发展到 23 个。参与中心已同意 (1) 提交研究方案的同行评审和指导过程 (2) 参与和支持 NAFTNet 批准的方案以及 (3) 机构财政支持。同行评审过程在科学会议上进行协调，参与中心的胎儿诊断和治疗领域的权威人士以及代表医学伦理学和生物统计学专业的临时成员之间自由交流和传播想法。 NAFTNet 是一个 501c3 组织，旨在实现妇女、种族/族裔少数群体和残疾人的适当代表性。

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.