Child and Family Consequences of Congenital Zika Syndrome in Brazil

项目摘要/摘要 寨卡病毒的广泛爆发及其对在宫内暴露的婴儿的破坏性影响使许多人 弱势家庭面临着养育孩子的长期影响，可能患有严重的和有限的 残疾人士。尽管国际上一直关注寨卡病毒的爆发，但迫切需要纵向 仍在对受影响的婴儿和家庭进行监测。通过RTI的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 先天性寨卡病毒综合征(CZS)的自然病史、长期后遗症以及与儿童和 家庭结果。我们将对240名CZS婴儿及其家属进行全面、纵向的调查 儿童早期发展、健康、功能能力和家庭适应的研究。这项研究具有 有潜力增加对这些家庭短期和长期需求的了解；促进 共同努力支持家庭；并提高对预后、调解人/主持人、 以及对受CZS影响的个人的治疗可能性。此外，我们会以这项研究为平台， 在FAV培训调查人员，并在最初的资助期之后建立合作研究的能力。

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.