American Journal of Medical Genetics, December 14, 2020
Iêda Maria Orioli, Helen Dolk, Jorge Lopez-Camelo, Boris Groisman, Adriana Benavides-Lara, Lucas Gabriel Gimenez, Daniel Mattos Correa, Marta Ascurra, Eliana de Aquino Bonilha, Maria Aurora Canessa-Tapia, Giovanny Vinícius Araújo de França, Paula Hurtado-Villa, Marisol Ibarra-Ramírez, Rosa Pardo, Dania Maria Pastora, Ignacio Zarante, Flávia Schneider Soares, Flávia Martinez de Carvalho, Mariana Piola, ReLAMC Group
The early detection of congenital anomaly epidemics occurs when comparing current with previous frequencies in the same population. The success of epidemiologic surveillance depends on numerous factors, including the accuracy of the rates available in the base period, wide population coverage, and short periodicity of analysis. This study aims to describe the Latin American network of congenital malformation surveillance: ReLAMC, created to increase epidemiologic surveillance in Latin America. The authors describe the main steps, tasks, strategies used, and preliminary results. From 2017 to 2019, five national registries (Argentina [RENAC], Brazil [SINASC/SIM‐BRS], Chile [RENACH], Costa Rica [CREC], Paraguay [RENADECOPY‐PNPDC]), six regional registries (Bogotá [PVSDC‐Bogota], Cali [PVSDC‐Cali], Maule [RRMC SSM], Nicaragua [SVDC], Nuevo‐León [ReDeCon HU], São Paulo [SINASC/SIM‐MSP]) and the ECLAMC hospital network sent data to ReLAMC on a total population of 9,152,674 births, with a total of 101,749 malformed newborns (1.1%; 95% CI 1.10–1.12). Of the 9,000,651 births in countries covering both live and stillbirths, 88,881 were stillborn (0.99%; 95% CI 0.98–0.99), and among stillborns, 6,755 were malformed (7.61%; 95% CI 7.44–7.79). The microcephaly rate was 2.45 per 10,000 births (95% CI 2.35–2.55), hydrocephaly 3.03 (2.92–3.14), spina bifida 2.89 (2.78–3.00), congenital heart defects 15.53 (15.27–15.79), cleft lip 2.02 (1.93–2.11), cleft palate and lip 2.77 (2.66–2.88), talipes 2.56 (2.46–2.67), conjoined twins 0.16 (0.14–0.19), and Down syndrome 5.33 (5.18–5.48). Each congenital anomaly showed heterogeneity in prevalence rates among registries. The harmonization of data in relation to operational differences between registries is the next step in developing the common ReLAMC database.