测量患有超罕见疾病的儿科患者的与健康相关的生活质量:一个多中心研究

Osama Y Muthaffar1, Mahmoud A Gaddoury2, Mohammed A Alsubaie3

  • 1Department of Pediatrics, Faculty of Medicine, King Abdulaziz University, Jeddah, Saudi Arabia.

PubMed
概括

患有的超罕见疾病 (URD) 显著影响患者的生活质量 (QoL). 这项研究强调了需要基于证据的数据来应对受影响社区的这些挑战.

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