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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...

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Bibliografski detalji
Izdano u:Eur J Haematol
Glavni autori: Salek, Sam, Boscoe, Audra N., Piantedosi, Sarah, Egan, Shayna, Evans, Christopher J, Wells, Ted, Cohen, Jennifer, Klaassen, Robert J., Grace, Rachael, Storm, Michael
Format: Artigo
Jezik:Inglês
Izdano: John Wiley and Sons Inc. 2020
Teme:
Online pristup:https://ncbi.nlm.nih.gov/pmc/articles/PMC7216839/
https://ncbi.nlm.nih.gov/pubmed/31880847
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1111/ejh.13376
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