The national spina bifida patient registry past, present, and future
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The national spina bifida patient registry past, present, and future

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Details:
  • Alternative Title:
    J Pediatr Rehabil Med
  • Personal Author:
  • Description:
    "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.
  • Pubmed ID:
    29125523
  • Pubmed Central ID:
    PMC6013029
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