The Down Syndrome Growing Up Study

唐氏综合症成长研究

• 批准号: 8323808
• 负责人: Babette S Zemel
• 金额: $ 27万
• 依托单位: CHILDREN'S HOSP OF PHILADELPHIA
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-09-30 至 2013-09-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8323808
• 关键词: Down; Syndrome; Growing; Up; Study

PROJECT SUMMARY Down syndrome (DS) is a common genetic disorder occurring in approximately 1 in 700 births. Children with DS 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, the impact of current medical conditions and to detect early signs of as yet undiagnosed medical conditions (e.g., hypothyroidism, hydrocephalus) in a timely manner. Weight-for-length in infants and body mass index (BMI) in older children and adolescents are also important screening tools for nutritional status assessment 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 Current growth charts for U.S. children with DS are available but outdated.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 and improved 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-length and body mass index. In addition, the recognized racial difference in life expectancy in people with DS underscores the importance of developing growth charts that have a more accurate representation of race and ethnic groups than previously published charts. Moreover, new charts should be based on research quality measurements, with an appropriate representation of age, sex, ethnic, racial and socioeconomic groups in order to be representative of children with DS. Incremental measures, especially for height, are also needed so that growth velocity of children with DS can be characterized. These charts are crucial in allowing physicians to make 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 with DS through (1) a large specialty care center for children with DS, (2) an extensive regional primary pediatric care 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 of age and sex groups. The evaluation will include anthropometric assessment of growth in size, body proportions and body composition in order to develop guidelines for the use of BMI for obesity screening based on measures 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 created using the state-of-the-art approach for constructing normalized growth charts with smoothed percentile distributions for use in clinical care. Factors associated with growth failure in children with DS will be explored.

项目概要 唐氏综合症 (DS) 是一种常见的遗传性疾病，大约每 700 名新生儿中就有 1 人患有唐氏综合症。儿童有 与其他儿童相比，DS 出生时较小，并且身长/身高、体重和头围的生长速度较慢 孩子们。生长评估是重要的初级保健筛查工具，用于评估儿童的一般状况 健康状况、当前医疗状况的影响以及发现尚未诊断的医疗的早期迹象 及时发现病情（例如甲状腺功能减退症、脑积水）。婴儿和身体的身长体重 较大儿童和青少年的体重指数（BMI）也是营养状况的重要筛查工具 由于存在婴儿期发育不良和老年肥胖的风险，因此需要对整个生命周期进行评估。 目前美国 DS 儿童的生长曲线图已经可用，但已经过时。医疗保健和 在过去的几十年里，DS 儿童的预期寿命有所改善，而且 认识到需要修订身长、身高、体重、头围、身长体重增长图表 和体重指数。此外，公认的 DS 患者预期寿命存在种族差异 强调了开发更准确地反映种族和情况的生长图表的重要性 种族群体比以前公布的图表。此外，新图表应基于研究质量 测量，适当代表年龄、性别、民族、种族和社会经济群体 为了成为 DS 儿童的代表。还需要采取增量措施，尤其是高度措施，以便 可以表征 DS 儿童的生长速度。这些图表对于让医生能够 对他们照顾的 DS 儿童的成长做出判断。 因此，本研究的总体目标是招募一群患有以下疾病的婴儿、儿童和青少年： DS 通过 (1) 一个大型 DS 儿童专科护理中心，(2) 一个广泛的区域初级儿科中心 护理网络，(3) 以及通过社区支持团体、社会服务网络和广告。 将招募约 580 名婴儿和儿童并进行纵向评估（婴儿每季度一次，双 幼儿每年一次，儿童和青少年每年一次），以实现足够的代表性 年龄和性别组。评估将包括对体型增长、身体比例的人体测量评估 和身体成分，以便制定使用 BMI 进行肥胖筛查的指南 肥胖的措施。简短的调查问卷来描述社会人口特征、健康史、 喂养问题和体力活动将被纳入样本特征描述中。将创建生长图表 使用最先进的方法构建具有平滑百分位的标准化生长图表 用于临床护理的分布。将探讨与 DS 儿童生长障碍相关的因素。