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Complete Indicator Report of Birth Defects: Down SyndromeDefinitionNumber of cases of Down syndrome per 10,000 births.NumeratorNumber of cases of Down syndrome (confirmed by chromosomal analysis) among live births and fetal deaths occurring among women residing in Utah.DenominatorNumber of live births and stillbirths among women residing in Utah.Why Is This Important?Down syndrome is the most frequent genetic condition of childhood associated with intellectual impairment. Studying rates and trends of Down syndrome in Utah helps assess the burden of disease, plan for and distribute the resources needed to serve affected people and families, and estimate future needs. This information can also help monitor population-based survival and the level of preventive care provided to people with Down syndrome. The Utah Birth Defect Network (UBDN) has tracked Down syndrome since 1995.The diagnosis of Down syndrome is confirmed with cytogenetic testing that shows the additional chromosome 21 (or piece of 21) that is diagnostic for this condition. Children with Down syndrome are frequently born with additional structural malformations that can significantly affect their health and that often require surgical and medical treatment. The most common malformations occurring in children with Down syndrome are congenital heart malformations (50%). The American Academy of Pediatrics (AAP) has developed recommendations for health, supervision, and anticipatory guidance for infants and children with Down syndrome, to prevent complications and improve long-term health and survival by identifying early associated conditions and risk factors for morbidity. For example, the Academy recommends that all babies with Down syndrome have a pediatric cardiac evaluation with echocardiogram in the first month of life. Several studies show that now, with better clinical care and social support, people with Down syndrome are living longer. With appropriate care, people with Down syndrome can expect to live long lives, with varying degrees of independence in the community. The primary known risk factor for Down syndrome is advanced maternal age. Awareness of this association can help in understanding population rates of Down syndrome, project future number of affected births based on the trends in age-specific birth rates, and provide a basis for primary prevention of this condition. How Are We Doing?In 2009, the UBDN reports a rate of Down syndrome in Utah of 1 in 589 births (or 17 per 10,000 births). Since 1995, when the UBDN began tracking rates of Down syndrome, such rates have remained stable. Rates are much higher among women 35 years of age or older, and this too has been constant over time. The risk of having an affected pregnancy increases considerably and very quickly after age 35. In Utah, women 35 years of age or older contribute to 9.1% of all births but experience 41.3% of all pregnancies with Down syndrome.To date, there is no evidence to suggest that the prevalence of Down syndrome is increased within any particular racial group. In absolute numbers, approximately 70-80 affected pregnancies occur every year in Utah, with a cumulative total of approximately 1,100 cases from 1995 through 2009. How Do We Compare With U.S.?Because Down syndrome is determined by a chromosomal condition whose risk seems to depend primarily on maternal age, the occurrence of Down syndrome in different populations seems to reflect the population's maternal age distribution, with little variation due to other factors.We would expect to see the rate of Down syndrome in Utah to be at least as high as or even higher than in other parts of the United States for several reasons. In Utah the birth rate is high, and pregnancies tend to occur also at the higher end of childbearing age. Overall rates of Down syndrome in Utah (15.2 per 1,000 births for 2003 through 2007) are similar to those observed in the Atlanta registry in Georgia (14.5 per 10,000 births for 2003-2007). Such comparison is meaningful because the Atlanta registry (MACDP), which is run by the Centers for Disease Control and Prevention, uses tracking methods similar to those in the UBDN. Rates among women 35 years of age or older (2003-2007) appear to be higher in Utah (67.2 per 10,000 women of that age) than in Atlanta (43 per 10,000). This higher rate could depend on the wider age distribution at birth in Utah. Because risk for Down syndrome increases greatly for every year above 35 and particularly above 40, even small differences between Utah and Atlanta with respect to the number of pregnancies occurring in these higher maternal age groups could considerably affect the observed occurrence rates. What Is Being Done?The American Academy of Pediatrics has outlined specific recommendations for Down syndrome children. These recommendations cover several time periods from birth to 21 years and older. Details are available on the American Academy of Pediatric web site: www.aap.org.Specific services for families of affected children from birth to three years of age are provided in Utah by the Baby Watch Early Intervention Program, Utah Department of Health. Services include child health assessment; service coordination among providers, programs, and agencies; occupational and physical therapy; and speech and language therapy. Information on these services is available at www.utahbabywatch.org. Another resource is the Utah Collaborative Medical Home Portal, which is a project designed to provide information, tools, and resources for primary care physicians to enhance their ability to care for children with special health care needs. Information on the Utah Collaborative Medical Home Portal is available at their web site: www.medicalhomeportal.org. The CDC conducted a study of Down syndrome prevalence and survival estimates in 10 regions of the United States during 1979 through 2003. The study (reported in Pediatrics 2009;124:1565-1571) concluded that 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. Available ServicesDown Syndrome ClinicPrimary Children's Medical Center 100 N Mario Capecchi Drive Salt Lake City, Utah 84113 Phone (801) 662-1600 Children with Special Health Care Needs Utah Department of Health 44 N Mario Capecchi Drive PO Box 144610 Salt Lake City, UT 84114-4610 Phone (801) 584-8284 Toll Free (800) 829-8200 http://health.utah.gov/cshcn CSHCN provides services for children who have or are at risk for a chronic physical, developmental, behavioral, or emotional condition. Baby Watch Early Intervention Services 44 N Mario Capecchi Drive PO Box 144720 Salt Lake City, Utah 84114-4720 (801) 584-8226 (800) 961-4226 www.utahbabywatch.org Statewide early intervention services are available for families of affected children from birth to three years of age that include child health assessment, service coordination among providers, occupational and physical therapy, and speech and language therapy. Related IndicatorsRelated Relevant Population Characteristics Indicator Reports:
Graphical Data ViewsDown Syndrome Overall Birth Prevalence, Utah, 1995-2009
Record Count: 15
Data SourcesUtah Birth Defect Network. Utah Department of Health.Down Syndrome Birth Prevalence by Race and Ethnicity, Utah, 1995-2009
Record Count: 6
Data NotesHispanic persons may be of any race.Data SourcesUtah Birth Defect Network.Down Syndrome Birth Prevalence in Women Age 35 and Over and Under Age 35, Utah, 1995-2009
Record Count: 30
Data SourcesUtah Birth Defect Network.Down Syndrome Birth Prevalence by Maternal Age, Utah, 1995-2009
Record Count: 7
Data SourcesUtah Birth Defect Network. Utah Department of Health.Down Syndrome Cumulative Number of Pregnancies With Down Syndrome, Utah, 1995-2009
Record Count: 15
Data SourcesUtah Birth Defect Network.References and Community ResourcesUtah Birth Defect Networkwww.health.utah.gov/birthdefect Utah Down Syndrome Foundation There are chapters in Salt Lake/Tooele, Box Elder, Cache, Central Utah, Davis, Wasatch/Summit, Weber/Morgan, Rich/Wyoming, Southern Utah, Uintah Basin, and Utah County. Contact information for each of these chapters is available on the statewide website: www.udsf.org Utah Parent Center & Family to Family Network 2290 East 4500 South, Suite 110 Salt Lake City, Utah 84117-4428 Phone (801) 272-1051 Toll Free (800) 468-1160 voice or TDD Espanol (801) 272-1067 www.utahparentcenter.org www.utahfamilytofamilynetwork.org Medical Home Portal Department of Pediatrics University of Utah PO Box 581289 Salt Lake City, UT 84158 www.medicalhomeportal.org More Resources and LinksEvidence-based community health improvement ideas and interventions may be found at the following sites:
Additional indicator data by state and county may be found on these Websites:
Medical literature can be queried at the PubMed website. For an on-line medical dictionary, click on this Dictionary link.
Page Content Updated On 08/26/2011,
Published on 10/27/2011
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