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Development of the pyruvate kinase deficiency diary and pyruvate kinase deficiency impact assessment: Disease‐specific assessments
INTRODUCTION: Currently recommended patient‐reported outcome (PRO) measures for patients with pyruvate kinase (PK) deficiency are non‐disease‐specific. The PK Deficiency Diary (PKDD) and PK Deficiency Impact Assessment (PKDIA) were developed to be more targeted measures for capturing the symptoms an...
Autores principales: | Salek, Sam, Boscoe, Audra N., Piantedosi, Sarah, Egan, Shayna, Evans, Christopher J, Wells, Ted, Cohen, Jennifer, Klaassen, Robert J., Grace, Rachael, Storm, Michael |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
John Wiley and Sons Inc.
2020
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7216839/ https://www.ncbi.nlm.nih.gov/pubmed/31880847 http://dx.doi.org/10.1111/ejh.13376 |
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