The survival of children with Down syndrome (DS), one of the most common birth defects, has improvedmarkedly over the past few decades. However, substantial racial/ethnic disparities in survival have beenidentified. Children with DS often have co-occurring birth defects and other health and developmentalcomorbidities that affect the quality of their lives and influence public health programming. Longitudinal studiesusing population-based data are needed to understand the risk and preventive factors associated withracial/ethnic and other disparities in survival of and health and developmental comorbidities among childrenwith DS. The proposed research builds upon and extends the ongoing PELL Down syndrome Project (PDSP), whichuses the Massachusetts (MA) population-based Pregnancy to Early Life Longitudinal (PELL) data system toexamine prevalence of and disparities in infant morbidity and mortality, hospital service utilization, andassociated costs, among children with DS in MA from 2001-2005 overall and among four DS sub-groups: DSonly, DS + congenital heart defects (CHD), DS + CHD + other major non-cardiac birth defects (OMBD), andDS+OMBD. The proposed study expands the PDSP database by adding the 2006 and 2007 birth cohorts anddata on newborn hearing, extends the longitudinal follow-up period through 3 years of age, and proposes newnovel analyses to examine and identify potential reasons for racial/ethnic and other disparities among childrenwith DS for the following outcomes: 1) health comorbidities to ages 1 and 3 years; 2) survival to ages 1 and 3;and 3) developmental comorbidities to age 3. Using the PELL system's unique longitudinal linkages among multiple health and human service data sets,the proposed project will generate novel individual, contextual, and programmatic/health service level data toexamine disparities in comorbidities and survival among children with DS. The study will develop enhancedmeasures of health comorbidities, sociodemographic characteristics, and health service utilization. NationalDeath Index data will strengthen the survival analysis. Extensive information from Early Intervention (EI) will beused to more fully characterize developmental attainment, EI service usage, and Autism Spectrum Disorderco-occurrence. This project brings together a large, experienced research team with a wide range ofknowledge and skills. The three study aims and sub-aims will be assessed using bivariate, stratifiedmultivariate, and multi-level modeling. Study results will provide new, critical information that can influence DSprograms and policies to improve the health, survival and developmental trajectories of children with DS, theirfamilies, and their communities.
Racial/ethnic disparities in survival of children with Down syndrome, one of the most common birth defects, have been noted. Health and developmental comorbidities affect the quality of life for children with DS and have implications for public health programming. Building upon the ongoing PELL Down syndrome Project (PDSP) and utilizing the MA population-based Pregnancy to Early Life Longitudinal (PELL) data system, this study will examine and identify potential reasons for racial/ethnic and other disparities among children with DS for the following outcomes: 1) health comorbidities to ages 1 and 3 years;2) survival to ages 1 and 3 years; and 3) developmental comorbidities to age 3 years, overall and among four DS sub-groups: DS only, DS + congenital heart defects (CHD), DS + CHD + other major non-cardiac birth defects (OMBD), and DS+OMBD.
