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Measuring the Patient Experience in Rare Disorders: Benefit of Pragmatic Mixed-Methods Research in NUT Carcinoma
INTRODUCTION: Patient-centered outcome measurement (PCOM) is essential to capture the outcomes important to patients. However, it presents unique challenges in rare diseases, particularly those that are “young” (not diagnosed before the twenty-first century), with limited literature, lack of disease...
| Autores principales: | , , , , , |
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| Formato: | Online Artículo Texto |
| Lenguaje: | English |
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Springer Healthcare
2022
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| Materias: | |
| Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8929465/ https://www.ncbi.nlm.nih.gov/pubmed/35301699 http://dx.doi.org/10.1007/s40487-022-00192-6 |