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Measuring Burden of Illness in Phenylketonuria (PKU): Development of the PKU Symptom Severity and Impacts Scale as a Robust Patient-Reported Outcome
INTRODUCTION: Phenylketonuria (PKU) is a rare, metabolic genetic disorder that can cause various neuropsychological symptoms that often affect patients’ health-related quality of life, even for patients with good metabolic control. To date, no patient-reported outcomes (PRO) instrument combines the...
Autores principales: | Quinn, Jennifer, Georgiadis, Alexandros, Lewis, Hannah B., Jurecki, Elaina |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Springer Healthcare
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8684342/ https://www.ncbi.nlm.nih.gov/pubmed/34921666 http://dx.doi.org/10.1007/s12325-021-01986-2 |
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