Prevalence of Down Syndrome Among Children and Adolescents in 10 Regions of the United States

OBJECTIVE: We aimed to estimate the prevalence of Down syndrome (DS) among children and adolescents aged 0 to 19 years in 10 regions of the United States. METHODS: This study was a cross-sectional analysis of live-born infants with DS during 1979–2003 from 10 population-based birth defects registries in the United States. We estimated the prevalence of DS at birth and among children aged 0 to 19 years in each region and in all regions pooled. The prevalence of DS among children and adolescents was calculated overall and according to age group, race/ethnicity, infant gender, and presence of a major heart defect. RESULTS: From 1979 through 2003, the prevalence of DS at birth increased by 31.1%, from 9.0 to 11.8 per 10000 live births in 10 US regions. In 2002, the prevalence among children and adolescents (0–19 years old) was 10.3 per 10000. The prevalence of DS among children in a given age group consistently increased over time but decreased with age within a given birth cohort. The pooled prevalence of DS among children and adolescents was lower among non-Hispanic black individuals and other racial/ethnic groups compared with non-Hispanic white individuals; it was also lower among females than males. CONCLUSIONS: This study provides prevalence estimates of DS among children and adolescents from 10 US regions. These estimates varied according to region, race/ethnicity, and gender, suggesting possible variation in prevalence at birth or in survival rates on the basis of these characteristics.

[1]  T. Park,et al.  Disbanding a multidisciplinary clinic: effects on the health care of myelomeningocele patients. , 1994, Pediatric neurosurgery.

[2]  M. Kuppermann,et al.  Racial‐Ethnic Differences in Prenatal Diagnostic Test Use and Outcomes: Preferences, Socioeconomics, or Patient Knowledge? , 1996, Obstetrics and gynecology.

[3]  S G Thompson,et al.  A likelihood approach to meta-analysis with random effects. , 1996, Statistics in medicine.

[4]  C. Huether,et al.  Epidemiologic study of Down syndrome in a racially diverse California population, 1989-1991. , 1997, American journal of epidemiology.

[5]  H. Leonard,et al.  Survival of infants born with Down's syndrome: 1980-96. , 2000, Paediatric and perinatal epidemiology.

[6]  S. Wall,et al.  Ethnic differences in the impact of advanced maternal age on birth prevalence of Down syndrome. , 2000, American journal of public health.

[7]  Racial disparities in median age at death of persons with Down syndrome--United States, 1968-1997. , 2001, MMWR. Morbidity and mortality weekly report.

[8]  S. Rasmussen,et al.  Mortality associated with Down's syndrome in the USA from 1983 to 1997: a population-based study , 2002, The Lancet.

[9]  J. Martin,et al.  Births: final data for 2002. , 2003, National vital statistics reports : from the Centers for Disease Control and Prevention, National Center for Health Statistics, National Vital Statistics System.

[10]  C. Betz.  TRANSITION OF ADOLESCENTS WITH SPECIAL HEALTH CARE NEEDS: REVIEW AND ANALYSIS OF THE LITERATURE , 2004, Issues in comprehensive pediatric nursing.

[11]  B. Beresford.  On the road to nowhere? Young disabled people and transition. , 2004, Child: care, health and development.

[12]  A. Correa,et al.  Prenatal diagnosis, pregnancy terminations and prevalence of Down syndrome in Atlanta. , 2004, Birth defects research. Part A, Clinical and molecular teratology.

[13]  F. Bianchi,et al.  Trends and geographic inequalities in the prevalence of Down syndrome in Europe, 1980-1999. , 2005, Revue d'epidemiologie et de sante publique.

[14]  S. Rasmussen,et al.  Survival in infants with Down syndrome, Metropolitan Atlanta, 1979-1998. , 2006, The Journal of pediatrics.

[15]  Russell S Kirby,et al.  National estimates and race/ethnic-specific variation of selected birth defects in the United States, 1999-2001. , 2006, Birth defects research. Part A, Clinical and molecular teratology.

[16]  J. Reiss,et al.  Transition and transfer from pediatric to adult care of the young adult with complex congenital heart disease. , 2006, Cardiology clinics.

[17]  S. Gregorich,et al.  Beyond Race or Ethnicity and Socioeconomic Status: Predictors of Prenatal Testing for Down Syndrome , 2006, Obstetrics and gynecology.

[18]  Lilah M. Besser,et al.  Prevalence of down syndrome among children and adolescents in metropolitan Atlanta. , 2007, Birth defects research. Part A, Clinical and molecular teratology.

[19]  State birth defects surveillance program directory. , 2007, Birth defects research. Part A, Clinical and molecular teratology.

[20]  Rafat Hussain,et al.  The four ages of Down syndrome. , 2007, European journal of public health.

[21]  Lora J. H. Bean,et al.  Epidemiology of Down syndrome. , 2007, Mental retardation and developmental disabilities research reviews.

[22]  S. Lynch,et al.  Adults with Down's syndrome: the prevalence of complications and health care in the community. , 2007, The British journal of general practice : the journal of the Royal College of General Practitioners.

[23]  W. Mahle,et al.  Improving the quality of surveillance data on congenital heart defects in the metropolitan Atlanta congenital defects program. , 2007, Birth defects research. Part A, Clinical and molecular teratology.

[24]  B. Morrow,et al.  Reproductive Health of the Rapidly Growing Hispanic Population: Data from the Pregnancy Risk Assessment Monitoring System, 2002 , 2008, Maternal and Child Health Journal.

[25]  R. Hodapp,et al.  Hospitalizations of infants and young children with Down syndrome: evidence from inpatient person-records from a statewide administrative database. , 2007, Journal of intellectual disability research : JIDR.

[26]  S. Gilboa,et al.  Reporting birth defects surveillance data 1968-2003. , 2007, Birth defects research. Part A, Clinical and molecular teratology.

[27]  S. Rasmussen,et al.  Setting a public health research agenda for Down syndrome: Summary of a meeting sponsored by the Centers for Disease Control and Prevention and the National Down Syndrome Society , 2008, American journal of medical genetics. Part A.

[28]  John Burn,et al.  Twenty-year trends in prevalence and survival of Down syndrome , 2008, European Journal of Human Genetics.

[29]  E. Muggli,et al.  Has Prenatal Screening Influenced the Prevalence of Comorbidities Associated With Down Syndrome and Subsequent Survival Rates? , 2009, Pediatrics.