A retrospective cohort study of mortality among children with birth defects in New York State, 1983–2006

Abstract

Using the state-wide, population-based birth defects surveillance data to conduct a long-term follow-up of a large cohort of New York children, we were able to examine mortality and survival experience of the affected children during infancy and childhood period by individual birth defects of interest. As expected, children born with birth defects had a higher risk of mortality compared to children without birth defects. The magnitude of the risk varied by children's age, birth and maternal characteristics and the lethality of the specific birth defects involved.

Early risk factors for neonatal mortality in CAKUT: analysis of 524 affected newborns

“…In a previous study of infants with prenatally detected renal anomalies associated with multiple malformations and chromosomal defects, we found a mortality rate of 76% and, once more, the presence of oligohydramnios was significantly associated with an adverse outcome [44]. In a recent study, Wang et al [45], using data from the New York State Congenital Malformations Registry (CMR), detected a high mortality risk among infants (<1 year) with selected major birth defects who had LBW (<2,500 g), preterm birth (<37 weeks), and multiple birth defects. Similar findings had been reported previously based on data from the Canadian Congenital Anomalies Surveillance System [46].…”

The Prevalence of Congenital Hand and Upper Extremity Anomalies Based Upon the New York Congenital Malformations Registry

“…[8] It is one of the largest such registries in the country and annually includes approximately 11,000 children with birth anomalies among 270,000 live births. [9]…”

“…Periodic audits and regular assessments of accuracy and comprehensiveness are performed including a review of discharge data, discharge summaries, and on- site audits. [9] The data ascertainment for this registry is considered, therefore, a combination of active and passive. The sensitivity of the NYCRM data has been estimated at 86.5%,[11] similar to other registries including the Metropolitan Atlanta Congenital Defects Program (MACDP), considered the gold standard registry in the United States.…”

Twenty‐Five–Year survival of children with birth defects in New York State: A population‐based study

“…The Congenital Malformations Registry (CMR) of the New York State Department of Health (NYSDOH) was established as part of the Environmental Disease Surveillance Program in 1982. Since the inception of the CMR, birth defects surveillance data have been used to investigate the mortality and survival experience of New York infants (0-1 year old) with selected major birth defects (Druschel et al, 1996a(Druschel et al, , 1996bSalihu et al, 2004a;Salihu et al, 2004bSalihu et al, , 2008Salihu et al, , 2009Wang, et al, 2010). The long-term follow-up of the CMR children through record linkage to the death certificate files maintained by the NYSDOH makes it possible to examine long-term mortality and survival experience of New York children with a broad range of birth defects of interest.…”