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The national spina bifida patient registry past, present, and future
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Dec 11 2017
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Source: J Pediatr Rehabil Med. 10(3-4):205-210.
[PDF-444.39 KB]
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Alternative Title:J Pediatr Rehabil Med
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Personal Author:
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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.
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Pubmed ID:29125523
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Pubmed Central ID:PMC6013029
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Volume:10
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