科研喵使用ai读文献，祝你效率百倍，访问labcat.com.cn下载。 本期关注Haematologica(影响因子8.2)发表的重要论文"Histiocyte Society blueprint for non-Langerhans cell histiocytosis research: unraveling complex diseases through collaboration"。这项研究由Hershkovitz-Rokah O团队完成，为罕见血液疾病非朗格汉斯细胞组织细胞增多症提供了全面研究框架。研究强调，尽管MAPK通路靶向治疗已显著改善患者预后，但长期用药副作用、疾病自然史数据不足、分类系统陈旧及临床试验有限等挑战依然存在。该研究呼吁通过多机构合作建立大型注册数据库和新型临床试验，以获取高质量证据，指导这些复杂疾病的诊断、管理和预后策略，为罕见病患者带来新希望。
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