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Preliminary development of proxy-rated quality-of-life scales for children and adults with Niemann-Pick type C
OBJECTIVES: Niemann-Pick disease type C (NPC) is a rare life-limiting disease for which there is no cure. No scales currently exist to measure the impact of medication, physical therapy or clinical trials. The aim of this study was to develop age-appropriate Quality-of-Life (QoL) scales to measure t...
| Autores principales: | , , |
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| Formato: | Online Artículo Texto |
| Lenguaje: | English |
| Publicado: |
Springer International Publishing
2019
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| Materias: | |
| Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6803578/ https://www.ncbi.nlm.nih.gov/pubmed/31227959 http://dx.doi.org/10.1007/s11136-019-02234-5 |