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

• 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
• 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

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.

项目概要/摘要 寨卡病毒的广泛爆发及其对子宫内暴露的婴儿造成的毁灭性影响让许多人 弱势家庭面临养育潜在严重和限制性儿童的长期影响 残疾。尽管寨卡疫情已引起国际社会的关注，但迫切需要进行纵向研究 对受影响婴儿和家庭的监视仍然存在。通过 RTI 研究人员之间的合作 国际和阿尔蒂诺文图拉基金会（FAV），我们有一个前所未有的机会来研究 先天性寨卡综合征 (CZS) 的自然史、长期后遗症以及与儿童和儿童相关的因素 家庭结果。我们将招募 240 名 CZS 婴儿及其家人进行全面、纵向的研究。 研究儿童早期发展、健康、功能能力和家庭适应。这项研究有 增加对这些家庭短期和长期需求的了解的潜力；推动 共同努力支持家庭；并提高对预后、中介因素/调节因素的理解， 以及受 CZS 影响的个体的治疗可能性。此外，我们将利用该研究作为平台 培训 FAV 的研究人员，并建设初始资助期后合作研究的能力。