Sickle cell disease incidence among newborns in New York State by maternal race/ethnicity and nativity

Abstract

Purpose Sickle cell disease is estimated to occur in 1:300–400 African-American births, with higher rates among immigrants from Africa and the Caribbean, and is less common among Hispanic births. This study determined sickle cell disease incidence among New York State newborns stratified by maternal race/ethnicity and nativity. Methods Newborns with confirmed sickle cell disease born to New York State residents were identified by the New York State newborn screening program for the years 2000–2008 and matched to birth records to obtain birth and maternal information. Annual incidence rates were computed and bivariate analyses were conducted to examine associations with maternal race/ethnicity and nativity. Results From 2000 to 2008, 1,911 New York State newborns were diagnosed with sickle cell disease and matched to the birth certificate files. One in every 1,146 live births was diagnosed with sickle cell disease. Newborns of non-Hispanic black mothers accounted for 86% of sickle cell disease cases whereas newborns of Hispanic mothers accounted for 12% of cases. The estimated incidence was 1:230 live births for non-Hispanic black mothers, 1:2,320 births for Hispanic mothers, and 1:41,647 births for non-Hispanic white mothers. Newborns of foreign-born non-Hispanic black mothers had a twofold higher incidence of sickle cell disease than those born to US-born non-Hispanic black mothers (P < 0.001). Conclusion This study provides the first US estimates of sickle cell disease incidence by maternal nativity. Women born outside the United States account for the majority of children with sickle cell disease born in New York State. Such findings identify at-risk populations and inform outreach activities that promote ongoing, high-quality medical management to affected children.

Prenatal and newborn screening for hemoglobinopathies

“…Similar to previous reports, the birth prevalence of SCD has remained stable at 17.4 per 100 000 screened, affecting 1 : 350 Black births and 1 : 2560 Hispanic births [5,6]. These figures parallel those recently reported in New York state, citing annual incidence rates for SCD of 1 : 230 non-Hispanic Black births and 1 : 2320 Hispanic births [7].…”

Sickle cell in sickle cell disease in Latin America and the United States

“…National and state‐specific prevalence estimates for African American and Hispanic populations (Table ) were based on records from the National Newborn Screening Information System (NNSIS) for 2005–2007 for all 50 states and territories, the New York State newborn screening program for the years 2000–2008, and the Registry and Surveillance System for Hemoglobinopathies (RuSH) for 2004–2008 . Table provides U.S. SCD population and prevalence estimates, highlighting the substantial numbers of affected Hispanic newborns across the U.S.…”

“…Latino sickle cell in the U.S. National and state-specific prevalence estimates for African American and Hispanic populations (Table I) Table I provides U.S. SCD population and prevalence estimates, highlighting the substantial numbers of affected Hispanic newborns across the U.S. Regional variation for Latino SCD reflects considerable differences in prevalence between Latino communities [1,10,23]. Low rates of SCD and sickle trait in U.S. newborns of Mexican ancestry are consistent with low prevalence rates reported from Mexico [17].…”

Personalized Medicine, Availability, and Group Disparity: An Inquiry into How Physicians Perceive and Rate the Elements and Barriers of Personalized Medicine

“…These perceptions may be mirroring Mendelian disorders which often vary among populations. Well known examples of Mendelian disorders whose risk varies by race include cystic fibrosis, which is more common in people of Northern European descent [54], and sickle cell trait, which is more common in people of African and Mediterranean descent [55]. Demographic characteristics such as race and ethnicity serve as loose proxies for capturing these types of subpopulation variation and may very well play a significant role in probing environmental and genetic routes of diseases [1,9,56,57].…”