β-地中海贫血治疗方法的创新和需求导向研究

Mihaiescu Dan, Bianca-Ioana Gutu, E. Severin, Vlad Tanase
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引用次数: 0

摘要

地中海贫血是一种众所周知的常染色体隐性遗传的血液遗传疾病。地中海贫血是一种罕见的、相对罕见的或常见的疾病,在世界各地都有发现,这取决于种族人口。受影响的个体有慢性贫血,伴有生长迟缓、皮肤苍白、虚弱、疲劳和更严重的并发症,导致早期死亡。重症患者需要终生频繁输血,依靠献血维持生命。这篇文献综述强调了β -地中海贫血患者没有得到最佳满足的医疗保健需求。以需求为导向的研究可以通过更适当的疾病管理来帮助改善临床结果,提高提供者满意度,并降低护理成本。
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Innovative and Needs-led research on β-thalassemia treatment methods
Beta-thalassemia is a well-known blood genetic disorder inherited in an autosomal recessive manner. Beta-thalassemia is found everywhere in the world as a rare, relatively rare, or common disease depending on the ethnic population. Affected individuals have chronic anemia associated with delayed growth, pale skin, weakness, fatigue, and more serious complications resulting in early death. Those with the severe form need frequent lifelong transfusions and depend on blood donations to survive. This literature mini-review highlights the healthcare needs that are not optimally met by people living with beta-thalassemia. The needs-led research can help to improve clinical outcomes through more appropriate management of the disease, increase provider satisfaction, and reduce the cost of care.
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