Seven New Studies on Spina Bifida Published

MakingADifference

CDC scientists and research partners recently published seven studies on spina bifida published, a birth defect that affects the spine and can cause physical and intellectual disabilities. Data for these studies come from CDC’s National Spina Bifida Patient Registry (NSBPR), which describes and compares patterns of clinical practice for persons with spina bifida. We have summarized these new studies below.

Publication: The National Spina Bifida Patient Registry: Past, Present, and Future

This commentary shares successes of CDC’s National Spina Bifida Patient Registry, notably a urologic protocol to preserve renal function in newborns and children with SB and a Skin Breakdown Prevention Care Bundle.

Publication: Evaluation of Spina Bifida Transitional Care Practices in the United States

Due to medical advances, an increasing proportion of children with SB are surviving into adulthood. In this publication, CDC scientists found that SB clinics offer a range of transition services to help patients, but some gaps exist. CDC hopes SB clinics will use the information to improve their transition care practices.

Publication: Longitudinal Study of Bladder Continence among People with Spina Bifida in the National Spina Bifida Patient Registry

For people with SB, achieving urinary continence is a vital part of staying healthy and functioning independently. In this publication, CDC scientists use NSBPR data to show that the urinary reconstructive surgeries and management strategies becoming standard practices are helping patients achieve urinary continence.

Publication: Variation in Bowel and Bladder Continence across US Spina Bifida Programs: A Descriptive Study

In this publication, CDC scientists found that less than half of SB patients studied report bladder or bowel continence. Additionally, continence differs among NSBPR clinics. More research might help identify what interventions or other factors are associated with continence.

Publication: Bowel Management and Continence in Adults with Spina Bifida: Results from the National Spina Bifida Patient Registry, 2009-2015 

In this analysis, CDC scientists use NSBPR data to describe significant differences in bowel management and continence among adults, adolescents, and children with SB, as well as differences in SB type. The findings help evaluate care of SB adults, and provide realistic expectations about future continence management. 

Publications: Bladder Reconstruction Rates Differ among Centers Participating in National Spina Bifida Patient Registry and Variation in Surgical Management of Neurogenic Bowel among Centers Participating in National Spina Bifida Patient Registry

In order to treat or prevent neurogenic bladder and/or bowel dysfunction, many individuals with SB undergo surgical treatment. Using NSBPR data, scientists describe variation in the surgical treatment of SB patients among NSBPR clinics. Such variation may imply overuse or underuse of those procedures, either of which may be significant problems in these complex cases. Given the significant social and financial costs of these surgeries, additional research may help guide physicians and surgeons in their care decisions.

Visit CDC’s spina bifida website for more information about our efforts to help people affected by spina bifida live life to the fullest.

bloodisorders