North American Fetal Therapy Network Biannual Scientific Meetings

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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.