日本公共健康保险制度的新基因组战略行动,以缩短罕见病和疑难杂症患者的 "诊断奥德赛"。

IF 2.6 3区 生物学 Q2 GENETICS & HEREDITY Journal of Human Genetics Pub Date : 2024-08-15 DOI:10.1038/s10038-024-01285-y
Jiro Ezaki, Yukari Takahashi, Harutaka Saijo, Fuyuki Miya, Kenjiro Kosaki
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引用次数: 0

摘要

2024 年 6 月,日本政府推出了一项新的基因组战略行动,以缩短罕见难治疾病患者的 "诊断之路":六类罕见病:(i) 肌无力组;(ii) 生长迟缓、智力障碍和特征性面容组;(iii) 智力障碍/癫痫组;(iv) 心肌病组(主要是成人发病);(v) 蛋白尿组;(vi) 发烧、炎症、皮疹、骨关节炎组,被新认定为 "难以区分的疾病",如果患者属于这六类疾病之一,并满足一定条件,可报销综合基因组检测费用。全面基因组检测的引入将提高疾病的诊断率,对加强日本的罕见病和疑难病政策具有重大潜力。日本的新战略及其合理性将为其他由公共医疗保险系统支持的全民医保国家的综合基因组检测保险报销提供参考。
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Japanese Public Health Insurance System's new genomic strategic action to shorten the "diagnostic odyssey" for patients with rare and intractable diseases.

In June 2024, the Japanese government introduced a new genomic strategic action to shorten the "diagnostic odyssey" for patients with rare and intractable diseases: Six groups of rare diseases, (i) Muscle weakness group, (ii) Growth retardation, intellectual disability, and characteristic facial features group, (iii) Intellectual disability/epilepsy group, (iv) Cardiomyopathy group (mainly adult onset) (v) Proteinuria group, (vi) Fever, inflammation, skin rash, osteoarthritis group, have been newly recognized as "difficult-to-differentiate disorders" and comprehensive genomic testing can be reimbursed when patients belong to one of the six groups and certain requirements are met. The introduction of comprehensive genomic testing will improve the diagnosis rate of diseases and have significant potential to enhance Japan's rare and intractable disease policy. The new strategy in Japan and its rationale will be a reference for insurance reimbursement of comprehensive genomic testing in other countries that have universal health coverage supported by the public health insurance system.

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来源期刊
Journal of Human Genetics
Journal of Human Genetics 生物-遗传学
CiteScore
7.20
自引率
0.00%
发文量
101
审稿时长
4-8 weeks
期刊介绍: The Journal of Human Genetics is an international journal publishing articles on human genetics, including medical genetics and human genome analysis. It covers all aspects of human genetics, including molecular genetics, clinical genetics, behavioral genetics, immunogenetics, pharmacogenomics, population genetics, functional genomics, epigenetics, genetic counseling and gene therapy. Articles on the following areas are especially welcome: genetic factors of monogenic and complex disorders, genome-wide association studies, genetic epidemiology, cancer genetics, personal genomics, genotype-phenotype relationships and genome diversity.
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