ELBW

该子项目是利用NIH/NCRR资助的中心赠款提供的资源的许多研究子项目之一。子项目和研究者（PI）可能从另一个NIH来源获得了主要资金，因此可以在其他CRISP条目中表示。所列机构为中心机构，不一定为研究者机构。在过去二十年中，极低出生体重婴儿的死亡率大幅下降。大量的文献集中在这些婴儿的结果是可用的，但在婴儿期或儿童期的障碍条件的流行率的明确定义尚未公布。目前，已发表的研究提供了相互矛盾的结果和结论。由于极低出生体重儿的护理需要大量的资源，因此当讨论成本与效益时，关于极低出生体重儿结局的准确信息是必不可少的。具体而言，研究目的是： - 追踪并成功跟踪18个月大时，超过80%的婴儿进入新生儿研究网络的通用数据库[GDB]，出生体重为401- 1，500克，出生于1993年1月1日之后，-通过运动技能、认知技能、语言和行为领域的标准化方法表征研究人群的发育，- 确定ELBW中18-22个月（校正年龄）的死亡率和特定医学疾病的患病率， - 为了表征该人群在18个月时的生长结果及其与神经发育结果的关系， - 确定这一人口中家庭的社会经济地位及其与发展成果的关系， - 确定这一人群中的重大家庭压力及其与家庭完整性以及对医疗和发育护理的依从性的关系， - 评估这一人群对特殊支持服务和早期干预计划的利用情况。将NICHD新生儿研究网络（GDB）的信息与18个月的随访评估联系起来，为解决卫生政策辩论以及评估护理实践的影响提供了独特的机会。

This subproject is one of many research subprojects utilizing the resources provided by a Center grant funded by NIH/NCRR. The subproject and investigator (PI) may have received primary funding from another NIH source, and thus could be represented in other CRISP entries. The institution listed is for the Center, which is not necessarily the institution for the investigator. Mortality rates have decreased dramatically over the past two decades among extremely low birth weight (ELBW) infants. A large volume of literature focused on outcomes of these infants is available, but a clear definition of the prevalence of handicapping conditions during infancy or childhood has yet to be published. Currently, published studies offer conflicting results and conclusions. Accurate information concerning outcome for ELBW infants is essential when cost versus benefit discussions arise because of the tremendous resources utilized in the care of the ELBW infant. Specifically, study objectives are: - to track and successfully follow at 18 months of age more than 80% of babies entered into the generic database [GDB] of the Neonatal Research Network with birth weights 401-1,500 grams born after January 1, 1993, - to characterize development of the study population by standardized methods in the areas of motor skills, cognitive skills, language, and behavior, - to determine the 18-22 month (corrected age) mortality and the prevalence of specific medical morbidities in ELBW, - to characterize growth outcome and its relationship to neurodevelopmental outcome in this population at 18 months, - to identify the socio-economic status of families in this population and its relationship to developmental outcome, - to identify significant family stress in this population and its relationship to family integrity as well as compliance with medical and developmental care, - to assess the utilization of special support services and early intervention programs by this population. Linking information from the NICHD Neonatal Research Network (GDB) to a follow-up assessment at 18 months provides a unique opportunity to address health policy debates as well as evaluate the impact of care practices.