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.
Capitalizing on a partnership with the Altino Ventura Foundation (FAV), one of the few institutions providing intensive intervention and surveillance to children with congenital Zika syndrome (CZS) and their families, we will enroll and follow the development of 240 affected babies. This project will be the first comprehensive longitudinal study of early development in providing an understanding of the evolving natural history of CZS and baseline data for comparing impact in other populations or for examining the effects of future treatment programs. We will provide the first examination of families and how they adapt to the significant caregiving demands imposed by CZS and explore the impact of service access and support on outcomes for children and their caregivers.
| Wheeler, Anne C (2018) Development of Infants With Congenital Zika Syndrome: What Do We Know and What Can We Expect? Pediatrics 141:S154-S160 |
| Bailey Jr, Donald B; Ventura, Liana O (2018) The Likely Impact of Congenital Zika Syndrome on Families: Considerations for Family Supports and Services. Pediatrics 141:S180-S187 |
