Spina bifida (SB) any young adults with SB are unemployed or underemployed and ill-prepared to meet life's challenges. Much of this under-attainment can be traced back to their early academic eurocognitive factors contributing to these learning difficulties are poorly understood. Concurrently, with the proliferation of SB prenatal surgical repair, interest in elucidating its impact on neurocognitive outcomes has increased. The importance of long-term neurodevelopmental surveillance of these children is further underscored by the possible decline in neurologic function due to symptomatic cord tethering post prenatal repair. Moreover, the prevalence of neural tube defects has been shown consistently to be highest among Hispanics, and serious racial and ethnic health care disparities exist among children with chronic health conditions including SB. Further, the prevalence and severity of renal disease among individuals with SB have not been studied in a national sample reflecting present-day US demographics. More than 70,000 people in the United States live with, the most common permanently disabling birth defect. M challenges;yet, n The specific aims of the proposed study are to explore the role that prenatal repair may have on rates of tethered cord syndrome and neurocognitive development, and to explore the role that race and ethnicity play in the use of preventive urological care and in access to corrective urologic surgical interventions. For our methods, we will use the standardized National Spina Bifida Patient Registry forms and the SB electronic registry to collect data from patients, including those attending the large and racially diverse multi-disciplinary Texas Children's Hospital/Baylor College of Medicine Spina Bifida Clinic. Moreover, we intend to work towards the expansion and refinement of the variables currently obtained through this registry data collection instrument. We anticipate these results will lead to significant outcomes since they will guide future studies on the effects of prenatal SB repair and long-term neurologic and neurocognitive outcomes, and will further our understanding of race/ethnicity as a risk factor for adverse urologic outcomes. Our long-range goal is to propose change in clinical practice in order to develop population-level national standards for SB care management, and ultimately improve the lives of people with spina bifida.
The purpose of this proposal is to work collaboratively with the Centers for Disease Control and Prevention and other grantee spina bifida clinics to collect longitudinal data on individuals with spina bifida. The Texas Children's Hospital/Baylor College of Medicine Spina Bifida Clinic would add a large and a racially and ethnically diverse population to the national data registry. As data is collected and analyzed, changes to clinical practice may be proposed in order to develop population-level national standards for spina bifida care management and ultimately improve the lives of people with spina bifida.
|Kim, Irene; Hopson, Betsy; Aban, Inmaculada et al. (2018) Decompression for Chiari malformation type II in individuals with myelomeningocele in the National Spina Bifida Patient Registry. J Neurosurg Pediatr :1-7|
|Wiener, John S; Suson, Kristina D; Castillo, Jonathan et al. (2018) Bladder Management and Continence Outcomes in Adults with Spina Bifida: Results from the National Spina Bifida Patient Registry, 2009 to 2015. J Urol 200:187-194|
|Kim, Irene; Hopson, Betsy; Aban, Inmaculada et al. (2018) Treated hydrocephalus in individuals with myelomeningocele in the National Spina Bifida Patient Registry. J Neurosurg Pediatr :1-6|
|Liu, Tiebin; Ouyang, Lijing; Thibadeau, Judy et al. (2018) Longitudinal Study of Bladder Continence in Patients with Spina Bifida in the National Spina Bifida Patient Registry. J Urol 199:837-843|
|Wiener, John S; Suson, Kristina D; Castillo, Jonathan et al. (2017) Bowel management and continence in adults with spina bifida: Results from the National Spina Bifida Patient Registry 2009-15. J Pediatr Rehabil Med 10:335-343|
|Lupo, Philip J; Agopian, A J; Castillo, Heidi et al. (2017) Genetic epidemiology of neural tube defects. J Pediatr Rehabil Med 10:189-194|
|Freeman, Kurt A; Castillo, Heidi; Castillo, Jonathan et al. (2017) Variation in bowel and bladder continence across US spina bifida programs: A descriptive study. J Pediatr Rehabil Med 10:231-241|