More than 166,000 Americans are living with Spina Bifida (SB), a congenital neurologic defect that can affect multiple organ systems in the fetus, growing child, and adult and is the most common permanently disability birth defect in the U.S. The National SB Patient Registry (NSBPR) was initiated in 2009 by the Centers for Disease Control and Prevention (CDC) to create a national network of SB clinics linked through a common registry to provide 1) a clearer current picture of the health of SB patients around the country, 2) better describe the demographics of Americans living with SB, 3) assess the care being delivered at SB clinics both individually and collectively across the country, 4) answer hypothesis-driven questions to assess the impact of clinical interventions upon the health and quality of life of individuals with SB, 5) identify opportunities for future collaborative research and 6) potentially develop national standards of care for individuals with SB. Duke University has been a site of data collection for the NSBPR since 2011, and enrolled 225 patients from its SB clinic in the first two years. Given the large size of our SB clinic, including a relatively lare proportion of adult patients, as well as our proven participation in activities related to furtherig the aims of the NSBPR as a whole, we believe that our continued participation in the NSBPR is important and likely to enhance its success. This project proposes to further expand enrollment in the NSBPR at our site, enhance the information collected in the NSBPR thus far by continuing to administer new, expanded questionnaires to our patients, continue to work with our colleagues at CDC to use the enhanced data to answer hypothesis-driven questions, coalesce simple data on demographics and urologic management for presentation to the urology community on a national level, and initiate additional studies investigating specific outcomes of urologic surgery in SB patients including urinary continence, patient independence, and ultimately renal function.

Public Health Relevance

The National Spina Bifida Patient Registry (NSBPR) was established to create a national infrastructure to support clinical research and development of a systematic approach to improve quality of care for individuals with SB. In this application, the Duke site proposes to continue to recruit participants from its unique and substantial SB patient population.

Agency
National Institute of Health (NIH)
Institute
Centers for Disease Control and Prevention (NCBDD)
Type
Research Project--Cooperative Agreements (U01)
Project #
1U01DD001082-01
Application #
8821418
Study Section
Special Emphasis Panel (ZDD1)
Project Start
2014-09-01
Project End
2019-08-31
Budget Start
2014-09-01
Budget End
2015-08-31
Support Year
1
Fiscal Year
2014
Total Cost
Indirect Cost
Name
Duke University
Department
Surgery
Type
Schools of Medicine
DUNS #
City
Durham
State
NC
Country
United States
Zip Code
27705
Routh, Jonathan C; Joseph, David B; Liu, Tiebin et al. (2018) Bladder Reconstruction Rates Differ among Centers Participating in National Spina Bifida Patient Registry. J Urol 199:268-273
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
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
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
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Routh, Jonathan C; Joseph, David B; Liu, Tiebin et al. (2017) Variation in surgical management of neurogenic bowel among centers participating in National Spina Bifida Patient Registry. J Pediatr Rehabil Med 10:303-312
Wang, Hsin-Hsiao S; Lloyd, Jessica C; Wiener, John S et al. (2016) Nationwide Trends and Variations in Urological Surgical Interventions and Renal Outcome in Patients with Spina Bifida. J Urol 195:1189-94