Fetal Alert Network: An integrated population-based fetal care network – Linking conception to outcome

BACKGROUND: Fetal diagnosis and intervention are changing the nature and natural history of many congenital anomalies treated today. Given the small cohort numbers and complexity of many congenital anomalies, an integrated network of accurate and timely information sharing is essential for evidence-based best clinical practice and outcomes. METHODS: A prospective, population-based, real-time provincial database was established by a transdisciplinary team of antenatal care providers consisting of five perinatal centres and affiliated paediatric subspecialties providing care. RESULTS: Eight hundred thirty-two pregnant women referred for fetal anomalies were registered between April 2, 2005, and March 31, 2006. The women had a mean +/- SD age of 30+/-6.2 years, and approximately 90% of the pregnancies were spontaneously conceived. In addition, more than 90% of the women had no predisposing genetic history. The mean time of initial diagnosis was 21 weeks gestational age, and the mean time of referral was 24.7 weeks gestational age. Approximately 50% of the patients had no antenatal screening. Detailed analysis such as geographical mapping demonstrated regional differences in fetal anomalies prevalence, practice differences and clinical outcomes. CONCLUSIONS: Accurate, precise and real-time collection of fetal care and health systems utilization information establishes a new benchmark, and reveals some critical deficiencies such as lack of antenatal care and delayed referral for fetal anomalies in Ontario.