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IMPOWER: a national patient-generated registry for intestinal malrotation exploring diagnosis, treatment, and surgical outcomes.

Sydney A MartinezScott C FligorSavas TsikisMeagan ShortKatie E CorcoranAmy RogersKathleen M GuraMark Puder
Published in: Orphanet journal of rare diseases (2023)
Fewer than half of pediatric patients presented with the "classic" presentation of green bilious colored emesis. Yellow bilious emesis was more commonly reported, and chronic gastrointestinal symptoms (i.e., abdominal pain, reflux, constipation, diarrhea) and feeding intolerance were common following surgical procedures for malrotation. This novel PGR highlights the need for a multicenter prospective registry to characterize the natural history and develop consistent standards of care related to the diagnosis, treatment, and long-term care for patients with malrotation.
Keyphrases
  • abdominal pain
  • long term care
  • healthcare
  • quality improvement
  • palliative care
  • clinical trial
  • cross sectional
  • drug induced
  • chronic pain
  • health insurance
  • double blind