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

Details

• Alternative Title:
  J Pediatr Rehabil Med
• Personal Author:
  Thibadeau, Judy
• 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.
• Subjects:
  Article Child Child, Preschool Female Humans Infant Infant, Newborn Interventions Male Outcomes Patient Care Bundles Patient Registry Registries Spina Bifida Spinal Dysraphism United States

  More +
• Source:
  J Pediatr Rehabil Med. 10(3-4):205-210.
• Pubmed ID:
  29125523
• Pubmed Central ID:
  PMC6013029
• Document Type:
  Journal Article
• Funding:
  CC999999/ImCDC/Intramural CDC HHS/United States
• Volume:
  10
• Collection(s):
  CDC Public Access
• Main Document Checksum:
  urn:sha256:4a45ee15e78818cc141e3ce6c63b4472c68eeb06a28b731b43aff7342a16f629
• Download URL:
  https://stacks.cdc.gov/view/cdc/56268/cdc_56268_DS1.pdf
• File Type:
  [PDF - 444.39 KB ]