BACKGROUND:The purpose of this study was to describe the development and early implementation of a national spina bifida (SB) patient registry, the goal of which is to monitor the health status, clinical care, and outcomes of people with SB by collecting and analyzing patient data from comprehensive SB clinics. METHODS: Using a web-based, SB-specific electronic medical record, 10 SB clinics collected health-related information for patients diagnosed with myelomeningocele, lipomyelomeningocele, fatty filum, or meningocele. This information was compiled and de-identified for transmission to the Centers for Disease Control and Prevention (CDC) for quality control and analysis. RESULTS: A total of 2070 patients were enrolled from 2009 through 2011: 84.9% were younger than 18 years of age; 1095 were women; 64.2% were non-Hispanic white; 6.5% were non-Hispanic black or African American; and 24.2% were Hispanic or Latino. Myelomeningocele was the most common diagnosis (81.5%). CONCLUSIONS: The creation of a National Spina Bifida Patient Registry partnership between the CDC and SB clinics has been feasible. Through planned longitudinal data collection and the inclusion of additional clinics, the data generated by the registry will become more robust and representative of the population of patients attending SB clinics in the United States and will allow for the investigation of patient outcomes. Birth Defects Research (Part A) 97:36À41, 2013. Ó 2012 Wiley Periodicals, Inc.

Pediatric specialists have successfully improved the longevity and quality of life of many children with chronic health conditions. As these children reach adolescence and young adulthood, the scope of their concomitant medical problems often include those typically seen in older patients. As a result, these individuals need continuing quality health care in focused adult healthcare facilities. This article describes the effective partnership between pediatric and adult healthcare providers to create and implement an exemplar Spina Bifida Transition Program. The processes, strategies and tools discussed are likely to be useful to other healthcare professionals interested in developing pediatric to adult transition programs for adolescents and young adults with chronic health conditions.

SBTP is well-received by participants and their parents and may be useful model for other chronic health conditions.

Many concerns surround the preparation of a person with spina bifida for a successful transition into adult life and responsibilities. A model of intervention must be based on developmental concerns and timely issues from infancy through all stages of development to young-adult life. This article discusses, within a developmental framework, issues of transition in relation to physical, social, emotional, and educational/vocational needs; it also presents a conceptual framework for the transition into adulthood. Guidelines were developed by incorporating expected outcomes of people with spina bifida and using a philosophical framework that encompasses the achievement of a balance among dependence, independence, and interdependence. This model is based on developmental issues from infancy through all stages of development to young-adult life. Using this framework for care, the rehabilitation nurse can feel confident that the needs of clients with spina bifida and similar chronic conditions are being met.

When administered at home by parents while the child sleeps, therapeutic electrical stimulation is safe for bladder and bowel continence in the myelomeningocele population. It seems to increase significantly bladder capacity, does not appear to change urethral pressure profile and results in a subjectively improved sensation of pelvic fullness, enhancing urinary and fecal continence. The most beneficial effect of therapeutic electrical stimulation seems to be on the bladder wall and less so on the striated pelvic floor musculature with subjective enhancement of pelvic fullness also contributing positively.