Researchers at the University of Arizona College of Medicine – Tucson received $1.7 million in funding from the Centers for Disease Control and Prevention to improve knowledge regarding the prevalence, mortality and health outcomes for people of all ages living with spina bifida.
Spina bifida is a birth defect that occurs when an embryo's spinal cord does not properly close during the third and fourth weeks of pregnancy, resulting in a gap in the spine. According to the CDC, spina bifida occurs in 1 of every 2,875 births in the United States each year. Spina bifida can affect multiple body systems with symptoms ranging from mild to severe. It can cause mobility issues, urinary system complications and cognitive difficulties.
Advancements in medical care and folate supplementation have led to a reduced prevalence of spina bifida, but little is known about the unmet needs and gaps in care experienced by people with the condition as they age.
Conducting population-based surveillance of children with spina bifida into adulthood is critical for understanding what factors contribute to the health and quality of life of individuals living with spina bifida. Surveillance systems for birth defects identify babies born with a birth defect but do not have the capacity to follow them as they become children and adults."
Jennifer Andrews, PhD, principal investigator, associate professor of pediatrics at the College of Medicine – Tucson and director of the Arizona Research Investigating Disability and Disorders, or ARID Lab, at the Steele Children's Research Center
This project supplements the efforts of the CDC-sponsored National Spina Bifida Patient Registry by including longitudinal data for individuals with spina bifida who are not being treated by specialty care clinics. The funding will allow researchers to work with project sites to collect clinical data on spina bifida patients of all ages to increase knowledge of the spina bifida population, regardless of where individuals receive care.
Once collected, the data could be used to inform clinicians, public health programs, the spina bifida community and the public about the health status and outcomes for people with spina bifida.
"We want to ensure everyone has access to resources needed for optimal health and a high quality of life," Andrews said. "To do this, we need better data on what gaps and unmet needs exist for people with spina bifida across all ages."
This project is funded by the Department of Health and Human Services' Centers for Disease Control and Prevention under award no. NU01DD000045.
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