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Choosing between medical management and liver transplant in urea cycle disorders: A conceptual framework for parental treatment decision-making in rare disease.
Gerstein, Maya T; Markus, Anne R; Gianattasio, Kan Z; Le Mons, Cynthia; Bartos, Janice; Stevens, David M; Mew, Nicholas Ah.
  • Gerstein MT; Department of Health Policy and Management, Milken Institute School of Public Health, The George Washington University, Washington, District of Columbia.
  • Markus AR; Department of Health Policy and Management, Milken Institute School of Public Health, The George Washington University, Washington, District of Columbia.
  • Gianattasio KZ; Department of Health Policy and Management, Milken Institute School of Public Health, The George Washington University, Washington, District of Columbia.
  • Le Mons C; National Urea Cycle Disorders Foundation, Pasadena, California.
  • Bartos J; National Urea Cycle Disorders Foundation, Pasadena, California.
  • Stevens DM; Department of Health Policy and Management, Milken Institute School of Public Health, The George Washington University, Washington, District of Columbia.
  • Mew NA; Rare Disease Institute, Children's National Health System, Washington, District of Columbia.
J Inherit Metab Dis ; 43(3): 438-458, 2020 05.
Article en En | MEDLINE | ID: mdl-31883128
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Texto completo: 1 Banco de datos: MEDLINE Asunto principal: Padres / Conducta de Elección / Toma de Decisiones / Trastornos Innatos del Ciclo de la Urea Tipo de estudio: Prognostic_studies / Qualitative_research Límite: Adolescent / Child / Child, preschool / Female / Humans / Infant / Male / Newborn Idioma: En Año: 2020 Tipo del documento: Article
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Texto completo: 1 Banco de datos: MEDLINE Asunto principal: Padres / Conducta de Elección / Toma de Decisiones / Trastornos Innatos del Ciclo de la Urea Tipo de estudio: Prognostic_studies / Qualitative_research Límite: Adolescent / Child / Child, preschool / Female / Humans / Infant / Male / Newborn Idioma: En Año: 2020 Tipo del documento: Article