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(SDAS) Parent-newborn correlates of health issues in infants with Down Syndrome

Grantee: Vanderbilt University
Principal Investigator: Robert M. Hodapp
Project Number: R40MC08957
Project Date: 2/1/2008

Final Report

(SDAS) Parent-newborn correlates of health issues in infants with Down Syndrome Final Report (PDF)

Age group(s)

  • Perinatal/Infancy (0-12 months)

Targeted/Underserved Population

  • African American

Abstract

Compared to infants in the general population, infants with Down syndrome experience especially high rates of adverse birth outcomes, hospitalizations, and infant mortality. In this project, we extend these findings to relate birth outcomes to subsequent hospitalizations over the first year of life; to examine more closely infants with the syndrome who are born of African-American mothers and in rural areas; and to determine the maternal, prenatal practice, birth and hospitalization correlates to infant mortality. Infants with Down syndrome will be compared to the remaining population-group infants, with Down syndrome identified in three ways (Birth + Hospital confirmation; ICD-9 diagnosis on initial, birth hospitalization; children identified through Tennessee's three state-supported Genetics Clinics). Three secondary databases will be used for these analyses. First, we will use Tennessee's official Birth Records (1990-2006), which have detailed information about the mother, newborn, and maternal practices during pregnancy. Such information is collected in computerized form for over 80,000 infants per year. Second, we will examine the state's Hospital Discharge Records, (1997-2006), which record in-patient stays within all state hospitals (approximately 1.0 million per year). Hospital Discharge Records record the patient's age, sex, (primary and secondary) ICD-9 diagnoses and procedure codes, as well as length of stay and payer information. Third, we will use the state's official Death Records, which record the age, sex, and cause of death (death records will be checked against information from the National Death Index). These three sets of records will be linked both within infants (e.g., Birth Records to Hospital Discharge Records) and, for some analyses, to identify subsequent children of the same mother (e.g., to determine the effects of differing inter-pregnancy intervals). This study aims to: 1) Identify risk and protective factors associated with 1st-year hospitalizations in newborns and infants with Down syndrome; 2) Examine African-American newborns and rural newborns with Down syndrome; and, 3) Examine the health profiles of those infants with the syndrome who died in their first year. This study falls within MCH Strategic Research Initiative #4, Promoting the healthy development of MCH populations. Findings from this project promise to lead to screening tools to identify those newborns with Down syndrome who are most at-risk for non-birth hospitalizations or death, thereby allowing for increased vigilance and early intervention.

Publications

Listed is descending order by year published.

Burke MM, Urbano RC, Hodapp RM. Subsequent births in families of children with disabilities: using demographic data to examine parents' reproductive patterns. Am J Intellect Dev Disabil. 2011 May;116(3):233-245.

Goldman SE, Urbano RC, Hodapp RM. Determining the amount, timing and causes of mortality among infants with Down syndrome. J Intellect Disabil Res. 2011;55(1):85-94.


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