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