North American Fetal Therapy Network Biannual Scientific Meetings

描述（由申请人提供）：要求资助北美胎儿治疗网络（NAFTNet）未来五年两年一次会议的费用。该网络的建立是为了解决2004年8月16日至17日举行的由国家儿童健康和人类发展研究所（NICHD）、罕见疾病办公室和国家心肺和血液研究所支持的国家卫生研究院研讨会“胎儿治疗：需求评估和未来方向”引起的有关胎儿治疗的问题。建议成立一个由研究人员和临床医生组成的合作小组，以帮助为该领域的研究、临床进展和伦理问题制定国家议程。此外，人们认识到，由于胎儿治疗的创新和企业性质，发展这样一个群体将是一项挑战。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合作临床研究网络，研究胎儿疾病的自然史，并开发产前治疗干预措施，以改善结果。2005年10月，北美18个主要胎儿治疗单位的代表应邀参加了在德克萨斯州达拉斯举行的会议，会上向全体代表介绍了NAFTNet的概念、组织计划和使命。目前已有20个中心加入，同意(1)在提交研究方案时采用同行评审和指导流程(2)参与并支持NAFTNet批准的方案(3)机构财政支持。同行评议过程在科学会议上进行协调，在参与中心的胎儿诊断和治疗领域的权威人士和代表医学伦理和生物统计学专业的特设成员之间自由交流和传播思想。NAFTNet是一个501c3组织，旨在实现妇女、种族/少数民族和残疾人的适当代表。在过去的三年中，已经提交了14项研究提案，10项获得了NAFTNet的支持并正在进行中，2项得到了行业和联邦基金的财政支持，1项目前正在考虑与欧洲胎儿小组合作研究，这是一个由欧盟委员会资助的胎儿治疗研究项目。

DESCRIPTION (provided by applicant): Support is requested to underwrite the cost of the North American Fetal Therapy Network (NAFTNet) biannual meetings for the next five years. 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 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. In October of 2005 representatives of 18 major North American fetal therapy units were invited to a meeting in Dallas, TX where the concept, organizational plan and mission of NAFTNet were presented to the group. Twenty centers have now joined agreeing 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. In the past three years 14 research proposals have been submitted, 10 have gained NAFTNet support and are underway, 2 are financially supported by industry and federal funds, 1 is presently under consideration as a collaboration research effort with the EUROFETUS group, a fetal therapy research project funded by the European Commission. PUBLIC HEALTH RELEVANCE: Support is being requested for the biannual North American Fetal Therapy Network (NAFTNet) meetings for the next five years. NAFTNet is a "not for profit" collaborative research organization whose members are recognized authorities in the field of fetal therapy from major clinical research units in the United States and Canada. NAFTNet's primary mission is to provide a cooperative clinical research network to study the natural history of fetal disease and to develop therapeutic prenatal interventions to improve outcomes.