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日本公共医疗保险系统的新基因组战略行动,旨在缩短罕见和疑难疾病患者的“诊断困境”。

Japanese Public Health Insurance System's new genomic strategic action to shorten the "diagnostic odyssey" for patients with rare and intractable diseases.

机构信息

Ministry of Health, Labour and Welfare, Government of Japan, Chiyoda-ku, Tokyo, Japan.

Center for Medical Genetics, Keio University School of Medicine, Shinjuku-ku, Tokyo, Japan.

出版信息

J Hum Genet. 2024 Nov;69(11):549-552. doi: 10.1038/s10038-024-01285-y. Epub 2024 Aug 15.

DOI:10.1038/s10038-024-01285-y
PMID:39147823
Abstract

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.

摘要

2024 年 6 月,日本政府出台了一项新的基因组战略行动,以缩短罕见和疑难疾病患者的“诊断探索”:六组罕见疾病,(i)肌肉无力组,(ii)生长迟缓、智力残疾和特征性面部特征组,(iii)智力残疾/癫痫组,(iv)心肌病组(主要为成人发病)(v)蛋白尿组,(vi)发热、炎症、皮疹、骨关节炎组,被新认定为“难以区分的疾病”,当患者属于六组之一且满足某些要求时,可以报销综合基因组测试。综合基因组测试的引入将提高疾病的诊断率,并具有显著提高日本罕见和疑难疾病政策的潜力。日本的新策略及其基本原理将为其他拥有公共卫生保险系统支持的全民医保的国家提供综合基因组测试的保险报销提供参考。

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3
The diagnostic odyssey: insights from parents of children living with an undiagnosed condition.诊断之旅:患有未确诊疾病儿童的父母的见解。
Orphanet J Rare Dis. 2022 Jun 18;17(1):233. doi: 10.1186/s13023-022-02358-x.
4
Initiative on Rare and Undiagnosed Disease in Japan.日本罕见及未确诊疾病倡议。
JMA J. 2021 Apr 15;4(2):112-118. doi: 10.31662/jmaj.2021-0003. Epub 2021 Apr 8.
5
MGeND: an integrated database for Japanese clinical and genomic information.MGeND:一个整合日本临床和基因组信息的数据库。
Hum Genome Var. 2019 Dec 6;6:53. doi: 10.1038/s41439-019-0084-4. eCollection 2019.
6
National Registry of Designated Intractable Diseases in Japan: Present Status and Future Prospects.日本特定难治性疾病国家登记处:现状与未来展望。
Neurol Med Chir (Tokyo). 2017 Jan 15;57(1):1-7. doi: 10.2176/nmc.st.2016-0135. Epub 2016 Sep 21.
7
Extensive sequencing of seven human genomes to characterize benchmark reference materials.对七个人类基因组进行广泛测序以表征基准参考材料。
Sci Data. 2016 Jun 7;3:160025. doi: 10.1038/sdata.2016.25.
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9
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