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. 2017 Dec 11;10(3-4):205-210.
doi: 10.3233/PRM-170463.

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

Judy Thibadeau

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

Judy Thibadeau. J Pediatr Rehabil Med. .

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.

Keywords: Spina bifida; interventions; outcomes; patient registry.

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Conflict of interest statement

Conflict of interest

The author has no conflict of interest to report.

Figures

Fig. 1
Fig. 1
Geographic distribution of multidisciplinary clinics participating in the National Spina Bifida Patient Registry, 2017. Clinics participating in the registry and in the assessment of a urology protocol for newborns and young children, are indicated on this map by a red dot; clinics participating in the registry only are indicated by a green dot; and clinics that are participating in the registry and are self-funded are indicated by a gold dot.
Fig. 2
Fig. 2
National spina bifida patient registry data flow.
Fig. 3
Fig. 3
Percent of myelomeningocele patients aged 5+ years with urinary continence across clinics participating in the NSBPR (2009–2016) (N = 4,932).
See this image and copyright information in PMC

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