Down syndrome (DS) is a common genetic disorder occurring in approximately 1 in 700 births. Children withDS are smaller at birth and grow at a slower rate in length/height, weight and head circumference, than otherchildren. Growth assessment is an important primary care screening tool to assess a child's general state ofhealth, the impact of current medical conditions and to detect early signs of as yet undiagnosed medicalconditions (e.g., hypothyroidism, hydrocephalus) in a timely manner. Weight-for-length in infants and bodymass index (BMI) in older children and adolescents are also important screening tools for nutritional statusassessment across the lifespan because of the risk of failure to thrive in infancy and obesity at older ages.Current growth charts for U.S. children with DS are available but outdated. Advances in health care andimproved life expectancy of children with DS have occurred in the past few decades, and there is a well-recognized need for revised charts for growth in length, height, weight, head circumference, weight-for-lengthand body mass index. In addition, the recognized racial difference in life expectancy in people with DSunderscores the importance of developing growth charts that have a more accurate representation of race andethnic groups than previously published charts. Moreover, new charts should be based on research qualitymeasurements, with an appropriate representation of age, sex, ethnic, racial and socioeconomic groups inorder to be representative of children with DS. Incremental measures, especially for height, are also needed sothat growth velocity of children with DS can be characterized. These charts are crucial in allowing physicians tomake judgments about the growth of children with DS in their care.Accordingly, the overall goal of this study is to recruit a regional cohort of infants, children and adolescents withDS through (1) a large specialty care center for children with DS, (2) an extensive regional primary pediatriccare network, (3) and through community support groups, social services networks and advertising.Approximately 580 infants and children will be recruited and evaluated longitudinally (quarterly for infants, bi-annually for toddlers, and annually for children and adolescents) in order to achieve sufficient representation ofage and sex groups. The evaluation will include anthropometric assessment of growth in size, body proportionsand body composition in order to develop guidelines for the use of BMI for obesity screening based onmeasures of adiposity. Brief questionnaires to characterize sociodemographic characteristics, health history,feeding issues and physical activity will be included to characterize the sample. Growth charts will be createdusing the state-of-the-art approach for constructing normalized growth charts with smoothed percentiledistributions for use in clinical care. Factors associated with growth failure in children with DS will be explored.
Children with Down syndrome are smaller at birth and grow at a slower rate in length/height, weight and head circumference, than other children. Growth assessment is an important primary care screening tool to assess a child's general state of health and to detect early signs of as yet undiagnosed medical conditions, but current growth charts for U.S. children with Down syndrome are outdated. This study will recruit a large, contemporary, ethnically diverse sample of children with Down syndrome and create growth charts for use in clinical care.
|Zemel, Babette S; Pipan, Mary; Stallings, Virginia A et al. (2015) Growth Charts for Children With Down Syndrome in the United States. Pediatrics 136:e1204-11|