Pregnancy outcome and the need for centralized data collection in chorion villus sampling

Abstract

The development of first trimester prenatal diagnosis has evolved slowly over the past 16 years since the first reports of Mohr (1968) and other Scandinavian researchers (Hahnemann, 1974; Kullander et al., 1973). Until 1983 there was little collaboration or communication among the few workers interested in this approach. Partly as a result, the relative safety of the Chinese experience of the early 1970s went largely unnoticed until just recently (Department of Obstetrics and Gynaecology, Tietung Hospital, 1975). Wide appreciation of the critical observation of Kazy et al. (1979) that real-time ultrasound could greatly improve the sampling procedure, was delayed fully three years from its initial publication. The appearance of his report (Kazy et al., 1982) in an English-language journal finally drew attention to this approach. Even the more recent resurgence of interest in first trimester prenatal diagnosis fostered first by the British (Ward et al., 1983) and then the Italians (Simoni et al.,1983) drew attention only slowly among geneticists and obstetricians. These facts became evident to us in our early exploration of the method in late 1982 when our initial information came entirely from discussions with molecular biologists! Even after our own early work with chorion villus sampling (CVS) it was apparent that a very few pioneers were aware of the significant potential, diagnostic advantages, and unresolved procedural and laboratory risks of this approach. Therefore, after mid-1983 discussions among interested participants in the Fetal Medicine and Surgery Meeting in Aspen, Colorado, a newsletter was initiated to foster communication among CVS investigators. The Chorionic Villus Sampling Newsletter,informally dubbed the ‘CVS Latest News’ was initially circulated to a small group of known active investigators, members of the Fetal Medicine and Surgery Group and members of the International Cooperative Research Group on Prenatal Diagnosis and Fetal Therapy (formerly known as the Fetoscopy Club). The intent was to circulate information on the progress of investigations using the new procedure and to serve as a common international collection point for data on the number of procedures attempted, diagnostic results and problems with either the patients or their pregnancies. All data were contributed voluntarily by the collaborating investigators. The newsletter is compiled by the prenatal diagnosis group at the Division of Medical Genetics, Thomas Jefferson University, Philadelphia, Pennsylvania, USA; and circulated bimonthly to a list of approximately 500 recipients worldwide. It is supported by grants from the World Health Organisation’s Heritable Diseases Program and from the March of Dimes Birth Defects Foundation.