The National Spina Bifida Patient Registry: Past, present, and future

Abstract

“The National Spina Bifida Patient Registry: Past, Present, and Future” was presented at the Spina Bifida World Congress, March 17, 2017, San Diego, California. This commentary provides a summary of registry activities including the reason for development, a description of the clinic participants and their patients who are participating, analytic works and publications. Two specific efforts that are related to the work of the registry, a urologic protocol to preserve renal function for newborns and young children, and a skin breakdown prevention bundle developed and implemented in registry clinics, are highlighted.

The National Spina Bifida Patient Registry: A Decade's journey

“…Additionally, general information was identified across all of the articles to describe an overview of the NSBPR. The spectrum of articles was representative of individuals of all ages—newborns to 89 years of age (Thibadeau, ). Individuals were eligible to be included in the registry initially if they had one of four SB types: MMC, meningocele, lipomyelomeningocele, or fatty filum (Thibadeau et al, ).…”

“…Individuals were eligible to be included in the registry initially if they had one of four SB types: MMC, meningocele, lipomyelomeningocele, or fatty filum (Thibadeau et al, ). This eligibility was later expanded to include split cord malformation and terminal myelocystocele (Thibadeau, ). In many of the articles, the diagnoses were often grouped into two subtypes: MMC and non‐MMC.…”

“…Using this tool, the initial group of 10 SB clinics collected health‐related information from 2009 through 2011. MMC was the most common diagnosis (81.5%; Thibadeau, ). From the inception of the NSBPR, there have been challenging issues in the interpretation of some particular registry variables (e.g., differences across sites in definitions bowel and bladder continence); thus, as the registry has evolved, the enquiry points have been refined and expanded (Liu et al, ).…”

“…To accomplish this project, a clinic‐based model, rather than a population‐based registry, was chosen (Thibadeau et al, ). Additionally, along with describing the reason for the registry's development, Thibadeau () described the NSBPR participants. The author also summarized activities including the development of two clinical initiatives comprised of a urological protocol to preserve renal function in newborns/young children and a skin breakdown prevention bundle (Thibadeau, ).…”

“…With these aims in mind, the National Spina Bifida Patient Registry (NSBPR) was established in 2008, as a partnership between the CDC and SB clinics throughout the United States. Data collection for the NSBPR was launched in 2009, based on a systematic approach across all sites designed also to improve the quality of care provided during the concurrent clinic visit (Thibadeau, ). Initially comprised of 10 clinics, according to the CDC website last updated December 21, 2017, the NSBPR now encompasses nearly 8,000 participants, across 21 centers (Table ; https://www.cdc.gov/ncbddd/spinabifida/map/sb-clinic-map.html).…”