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[孤儿药:治疗罕见病的新机遇]

[Orphan drugs : New opportunities for the treatment of rare diseases].

作者信息

Beck M

机构信息

Institut für Humangenetik, Universitätsmedizin Mainz, Langenbeckstr. 1, 55131, Mainz, Deutschland.

Zentrum für seltene Erkrankungen des Nervensystems, Universitätsmedizin Mainz, Mainz, Deutschland.

出版信息

Internist (Berl). 2016 Nov;57(11):1132-1138. doi: 10.1007/s00108-016-0114-y.

Abstract

Not only in Europe and USA, but also in many other countries rare disorders-so-called orphan diseases-have attracted more and more attention. The formation of specialized centers for rare disorders has enabled the diagnosis of diseases that have been widely unknown before. In addition, pharmaceutical companies have recognized orphan diseases as a profitable source of revenue. The development and marketing of new drugs for rare diseases-so-called orphan diseases-means a great challenge for all who participate in the health care system: Because the number of patients who are available for a clinical study is mostly very small, it is often very difficult or even impossible to show statistically firm evidence of efficacy. The standard placebo-controlled, double-blind clinical trial is often inappropriate for the approval procedure of an orphan drug; thus other study designs or other parameters (e.g. biomarkers) have to be used to prove clinical efficacy of the study drug. Only relatively small amounts of drugs can be sold to the generally few patients affected by an orphan disease and clinical trials require an high amount of financial investment; therefore orphan drugs have in general extremely high prices. How long these high expenses can be borne by the health care system in view of the great number of rare diseases remains questionable.

摘要

不仅在欧洲和美国,在许多其他国家,罕见疾病(即所谓的孤儿病)也越来越受到关注。专门的罕见病治疗中心的设立使得之前很多不为人知的疾病得以诊断。此外,制药公司已将孤儿病视为有利可图的收入来源。开发和销售用于罕见病(即所谓的孤儿病)的新药,对所有参与医疗保健系统的人来说都是巨大挑战:因为可用于临床研究的患者数量通常非常少,往往很难甚至不可能从统计学上确凿证明药物的疗效。标准的安慰剂对照双盲临床试验通常不适用于孤儿药的审批程序;因此必须采用其他研究设计或其他参数(如生物标志物)来证明研究药物的临床疗效。孤儿病患者数量通常较少,能销售的药物数量也相对较少,而临床试验需要大量资金投入;所以孤儿药总体价格极高。鉴于大量罕见病的存在,医疗保健系统能承受这些高额费用的时间能有多久仍值得怀疑。

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