Testing the feasibility of a National Spina Bifida Patient Registry.

ABSTRACT:

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 1

SUBMITTER: Thibadeau JK 

PROVIDER: S-EPMC4470391 | biostudies-literature | 2013 Jan

REPOSITORIES: biostudies-literature