The Latin American network for congenital malformation surveillance: ReLAMC

Abstract

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. We 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.

Clinical and Descriptive Study of Orofacial Clefts in Colombia: 2069 Patients From Operation Smile Foundation

“…As the data in this study have been collected as the consecutive cases arriving in a non-for-profit organization dedicated exclusively to patients with any form of CL/P, there is no background population nor controls to which this population of patients can be contrasted. Unfortunately, this makes it impossible to calculate prevalence and incidence rates in order to compare our data to other local, national, and regional reports ( Sarmiento et al., 2018 ; Orioli et al., 2020 ; Rengifo & Guarnizo, 2020 ).…”

“…The CL/P malformations are the most frequent craniofacial birth defect, with an estimated global prevalence of 1.4 in 1000 live births ( Mossey et al, 2009 ), but regional differences have been observed ( Orioli et al, 2020 ). In general, the highest prevalence has been described in Amerindian populations (2.62/1000 live births) and the lowest prevalence in populations of African descent (0.58/1000 live births; Panamonta et al, 2015 ).…”

Prevalence of microcephaly: the Latin American Network of Congenital Malformations 2010–2017

“…This is the second paper reporting results from the newly formed ReLAMC network. 16 It provides additional data in the impact of Zika virus on the prevalence of microcephaly in seven countries in Latin America. For most registries, there are clear increases in the prevalence of microcephaly in 2016 and 2017 compared with those born in 2010-2015 which are consistent with the reported dates for the Zika virus epidemics and first trimester teratogenicity.…”

Open intrauterine repair of spina bifida aperta: Historical aspects, current availability, and clinical outcomes from the Latin American Spina Bifida Consortium

“…Spina bifida aperta (SBA), one of the most serious and devastating nonlethal congenital malformations, occurs with a frequency of approximately 0.5–1/1000 births 1–3 . In a recent study, the overall prevalence in Latin America was 2.89/10,000 births, 4 which is lower than previously reported. This is probably due to a drive for folic acid food fortification across the region 5 .…”