The CDC, with the help of the Professional Advisory Council of the SB Association, developed a set of hypothesis-driven questions to begin to collect data on SB (SB) patients nationwide in a standardized fashion. In 2008, an initial group of nine SB clinics were enrolled by the CDC to test the feasibility of a multi-institutional National SB Patient Registry. After two years, it has proven feasible, and the CDC is calling for additional SB clinics to join in the clinic registry to further test its feasibility.
The Spina Bifida Association (SBA) recently sponsored a survey of spina bifida clinics and interviews with persons with spina bifida (SB) and found that there was wide variation between clinic programs and gaps in care delivered. The evidence-based data for management of patients with SB was relatively weak, and there was insufficient research into these problems. It was determined that the establishment of a national infrastructure to support clinical research and development of a systematic approach to improve quality of care was necessary to make substantial progress in the care of individuals with SB. The Centers for Disease Control and Prevention (CDC), with the help of the Professional Advisory Council of the SBA, developed a set of hypothesis-driven questions to begin to collect data on SB patients nationwide in a standardized fashion. In 2008, an initial group of nine SB clinic was enrolled by the CDC to test the feasibility of a multi-institutional National Spina Bifida Patient Registry. After two years, it has proven feasible, and the CDC is calling for additional SB clinics to join in the clinic registry to further test its feasibility.
| 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 |
| 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 |
