North American Fetal Therapy Network Biannual Scientific Meetings

描述(由申请者提供)：申请资助北美胎儿治疗网络(NAFTNet)未来五年的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日在国立卫生研究院举办的题为“胎儿治疗：需求评估和未来方向”的研讨会所产生的有关胎儿治疗的问题，该研讨会得到了国家儿童健康和人类发展研究所(NICHD)、罕见病办公室和国家心肺和血液研究所的支持。有人建议成立一个由研究人员和临床医生组成的合作小组，以帮助制定该领域的研究、临床进展和伦理问题的国家议程。此外，与会者认识到，由于胎儿治疗的创新和创业性质，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与会者在接下来的一年里继续发展NAFTNet的组织结构，主要任务是创建一个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。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一次会议，会上向该小组介绍了NAFTNet的概念、组织计划和使命。目前已有20个中心加入，同意(1)提交研究方案的同行审查和指导过程，(2)参与和支持NAFTNet批准的方案，以及(3)机构财政支持。同行审查进程在科学会议中得到协调，参与中心的个人是胎儿诊断和治疗领域的权威，代表医学伦理和生物统计专业的特设成员之间可以自由交流和传播意见。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。在过去三年中，已提交了14项研究建议，10项已获得NAFTNet支持并正在进行中，2项得到行业和联邦基金的财政支持，1项目前正在考虑作为与EUROFETUS小组的合作研究努力，EUROFETUS小组是由欧盟委员会资助的一个胎儿治疗研究项目。 与公共卫生相关：正在请求为今后五年北美胎儿治疗网络(NAFTNet)会议提供支持。NAFTNet是一个非营利性的合作研究组织，其成员是来自美国和加拿大主要临床研究单位的胎儿治疗领域的公认权威。NAFTNet的主要任务是提供一个合作的临床研究网络，以研究胎儿疾病的自然历史，并开发治疗产前干预措施，以改善结果。

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.