Child and Family Consequences of Congenital Zika Syndrome in Brazil

巴西先天性寨卡综合症对儿童和家庭的影响

基本信息

批准号：
9912805
负责人：
Donald B Bailey
金额：
$ 55.35万
依托单位：
RESEARCH TRIANGLE INSTITUTE
依托单位国家：
美国
项目类别：
财政年份：
2017
资助国家：
美国
起止时间：
2017-08-17 至 2022-04-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9912805
关键词：
Activities of Daily Living Address Affect Age-Months Agreement Area Arousal Brazil Caregiver Burden Caregivers Centers for Disease Control and Prevention (U.S.)Characteristics Child Child Development Child Health Clinical Data Collaborations Collection Data Data Analyses Development Developmental Disabilities Disease Outbreaks Early Intervention Educational workshop Enrollment Environment Environmental Risk Factor Face Family Family Study Family dynamics Foundations Funding Future Goals Growth Head Head circumference Health Health Services Accessibility Hearing Human Development Impaired cognition Individual Infant Infection Institutes Institution International Intervention Interview Joints Knowledge Language Left Literature Longitudinal Studies Measures Mediating Mediator of activation protein Methods Microcephaly Modeling Motor Skills NIH Program Announcements Natural History Nature Neurologic Outcome Parent-Child Relations Parents Pediatrics Persons Pilot Projects Population Population Study Positioning Attribute Poverty Prospective Studies Protocols documentation Quasi-experiment Recommendation Reporting Research Research Design Research Personnel Research Priority Rural Secure Security Sensory Services Signs and Symptoms Sleep Social support Stress Surveys Temperament Time Training United States National Institutes of Health Vision ZIKA ZIKV infection calcification caregiving cognitive skill communication behavior congenital zika syndrome data management data warehouse disability early childhood experience family support feeding functional disability improved infancy infant outcome insight intervention program investigator training meetings neurodevelopment outcome forecast prenatal exposure programs recruit skills social social stigma success treatment program treatment research

项目摘要

PROJECT SUMMARY/ABSTRACT The extensive outbreak of Zika and its devastating impact on infants exposed in utero have left many vulnerable families facing the long-term implications of raising a child with potentially severe and limiting disabilities. Although there has been international focus on the Zika outbreak, an urgent need for longitudinal surveillance of affected infants and families remains. Through a partnership between researchers at RTI International and the Altino Ventura Foundation (FAV), we have an unprecedented opportunity to study the natural history of congenital Zika syndrome (CZS), long-term sequela, and factors associated with child and family outcomes. We will enroll 240 infants with CZS and their families in a comprehensive, longitudinal study of early childhood development, health, functional abilities, and family adaptation. This study has the potential to increase knowledge about the short- and long-term needs of these families; promote collaborative efforts to support families; and improve understanding of the prognosis, mediators/moderators, and treatment possibilities for individuals affected by CZS. Further, we will use the study as a platform to train investigators at FAV and build capacity for collaborative research beyond the initial funding period.

项目摘要/摘要 Zika的广泛爆发及其对子宫中暴露的婴儿的破坏性影响使许多人留下了面对抚养可能严重和限制的孩子的长期影响的脆弱家庭残疾。尽管国际关注的是Zika爆发，但迫切需要纵向对受影响的婴儿和家庭的监测仍然存在。通过RTI的研究人员之间的伙伴关系国际和阿尔蒂诺文图拉基金会（FAV），我们有前所未有的机会研究先天寨卡综合症（CZS），长期后遗症的自然史以及与儿童和儿童相关的因素家庭成果。我们将在一个全面的纵向中注册240名CZS及其家人的婴儿研究幼儿发展，健康，功能能力和家庭适应的研究。这项研究有增加对这些家庭短期和长期需求的知识的潜力；推动为支持家庭的协作努力；并提高对预后的理解，调解人/主持人，和受CZS影响的个体的治疗可能性。此外，我们将将研究作为一个平台在最初的资金期间，培训最爱的调查员，并为合作研究的能力增强了能力。