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Complete Indicator Report of Birth Defects: Down Syndrome

Definition

Number of cases of Down syndrome per 10,000 births.

Numerator

Number of cases of Down syndrome (confirmed by chromosomal analysis) among live births and fetal deaths occurring among women residing in Utah.

Denominator

Number 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 Services

Down Syndrome Clinic
Primary 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 Indicators

Related Relevant Population Characteristics Indicators:




Graphical Data Views

Down Syndrome Overall Birth Prevalence, Utah, 1995-2009

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confidence limits

Year Prevalence per 10,000 Births Lower Limit Upper Limit Numer- ator Denom- inator
Record Count: 15
1995 13.8 10.6 18.0 55 39,779
1996 16.6 13.1 20.9 70 42,298
1997 17.4 13.8 21.8 75 43,319
1998 10.8 8.2 14.3 49 45,327
1999 15.9 12.7 20.0 74 46,443
2000 13.7 10.7 17.4 65 47,578
2001 15.8 12.6 19.8 76 48,148
2002 15.8 12.7 19.7 78 49,386
2003 17.6 14.3 21.6 88 50,076
2004 15.1 12.1 18.9 77 50,918
2005 14.1 11.2 17.7 73 51,777
2006 14.2 11.3 17.7 76 53,720
2007 14.8 12.0 18.4 82 55,320
2008 13.4 10.7 16.8 75 55,915
2009 16.1 13.0 19.8 87 54,151

Data Sources

Utah Birth Defect Network. Utah Department of Health.



Down Syndrome Birth Prevalence by Race and Ethnicity, Utah, 1995-2009

::chart - missing::
confidence limits

Race/Ethnicity Prevalence per 10,000 Births Lower Limit Upper Limit
Record Count: 6
Asian/Pacific Islander 15.2 10.9 21.3
Black 14.9 7.5 29.3
Hispanic 18.1 15.7 21.0
Native American 12.3 7.0 21.4
White 14.3 13.4 15.3
All Races 15.0 14.1 15.9

Data Notes

Hispanic persons may be of any race.

Data Sources

Utah Birth Defect Network.



Down Syndrome Birth Prevalence in Women Age 35 and Over and Under Age 35, Utah, 1995-2009

::chart - missing::
confidence limits

Age: BrthDef Age 35 Year Prevalence per 10,000 Births Lower Limit Upper Limit
Record Count: 30
Women Age 35 or Older 1995 61.7 40.8 93.2
Women Age 35 or Older 1996 76.1 53.1 109.1
Women Age 35 or Older 1997 76.0 53.3 108.2
Women Age 35 or Older 1998 36.8 22.7 59.7
Women Age 35 or Older 1999 83.2 59.6 116.0
Women Age 35 or Older 2000 63.4 45.6 94.9
Women Age 35 or Older 2001 87.1 63.3 119.9
Women Age 35 or Older 2002 50.8 33.5 76.7
Women Age 35 or Older 2003 85.0 61.7 116.9
Women Age 35 or Older 2004 65.4 45.8 93.2
Women Age 35 or Older 2005 63.5 44.5 90.5
Women Age 35 or Older 2006 65.6 46.5 92.4
Women Age 35 or Older 2007 58.3 40.9 83.1
Women Age 35 or Older 2008 64.6 46.3 90.2
Women Age 35 or Older 2009 82.0 61.1 109.9
Women Under Age 35 1995 9.1 6.5 12.8
Women Under Age 35 1996 10.7 7.9 14.5
Women Under Age 35 1997 11.5 8.6 15.3
Women Under Age 35 1998 8.0 5.7 11.3
Women Under Age 35 1999 9.2 6.7 12.6
Women Under Age 35 2000 8.8 6.4 12.0
Women Under Age 35 2001 8.9 6.5 12.1
Women Under Age 35 2002 12.4 9.6 16.1
Women Under Age 35 2003 11.2 8.5 14.7
Women Under Age 35 2004 10.2 7.6 13.5
Women Under Age 35 2005 9.1 6.8 12.3
Women Under Age 35 2006 9.0 6.7 12.1
Women Under Age 35 2007 10.4 7.9 13.6
Women Under Age 35 2008 8.1 6.0 11.0
Women Under Age 35 2009 8.8 6.6 11.9

Data Sources

Utah Birth Defect Network.



Down Syndrome Birth Prevalence by Maternal Age, Utah, 1995-2009

::chart - missing::
confidence limits

Maternal Age Prevalence per 10,000 Births Lower Limit Upper Limit
Record Count: 7
14-19 10.1 7.8 13.0
20-24 8.6 7.4 9.9
25-29 8.2 7.2 9.5
30-34 13.6 11.8 15.6
35-39 48.8 43.4 55.0
40-44 149.5 128.3 174.2
45+ 352.0 233.6 527.2

Data Sources

Utah Birth Defect Network. Utah Department of Health.



Down Syndrome Cumulative Number of Pregnancies With Down Syndrome, Utah, 1995-2009

::chart - missing::
confidence limits

Year Number of Cases of Down Syndrome
Record Count: 15
1995 55.0
1996 125.0
1997 200.0
1998 249.0
1999 323.0
2000 388.0
2001 464.0
2002 542.0
2003 630.0
2004 707.0
2005 780.0
2006 856.0
2007 938.0
2008 1,013.0
2009 1,100.0

Data Sources

Utah Birth Defect Network.


References and Community Resources

Utah Birth Defect Network
www.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 Links

Evidence-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
The information provided above is from the Utah Department of Health's Center for Health Data IBIS-PH web site (http://ibis.health.utah.gov). The information published on this website may be reproduced without permission. Please use the following citation: "Retrieved Mon, 15 September 2014 18:53:44 from Utah Department of Health, Center for Health Data, Indicator-Based Information System for Public Health Web site: http://ibis.health.utah.gov".

Content updated: Tue, 19 Nov 2013 23:09:24 MST