Koong Amanda J, Irvin Veronica L, Narayan Aditya, Song Sujin, Kaplan Robert M
Department of Health Policy and Management, Fielding School of Public Health at the University of California at Los Angeles, Los Angeles 90095, USA.
McGovern Medical School at UTHealth Houston, Houston 77030, USA.
Health Aff Sch. 2025 Mar 18;3(4):qxaf057. doi: 10.1093/haschl/qxaf057. eCollection 2025 Apr.
There are substantial financial incentives to develop orphan drugs for rare diseases, but concerns about the quality and volume of supporting evidence have emerged. We compare evidence used to evaluate orphan and nonorphan drugs approved by the Food and Drug Administration (FDA) between 2016 and 2023. This retrospective cross-sectional analysis utilizes FDA data on approvals and study information from ClinicalTrials.gov to compare characteristics of studies relevant to orphan and nonorphan drugs approved between 2016 and 2023. Of the 368 total drugs approved, 50% were orphan drugs. The FDA-approved drugs based on significantly fewer studies for orphan (1.5 studies/drug) compared to nonorphan (2.4 studies/drug). Additionally, a significantly lower proportion of studies were completed before FDA approval for orphan drugs (25% vs 41%). Orphan drugs were significantly less likely to be evaluated in randomized clinical trials (RCTs) (34% vs 63%). Of these RCTs, there were significantly fewer completed before approval (40% vs 54%) and that had results posted (35% vs 53%). There was a significant difference in the available evidence for orphan and nonorphan drugs. As new legislation like Cures 2.0 is developed, it is critical to examine the balance between an expedited approval timeline and the standard of clinical evidence.
开发罕见病孤儿药存在巨大的经济激励,但对支持证据的质量和数量的担忧也随之出现。我们比较了2016年至2023年期间美国食品药品监督管理局(FDA)批准的孤儿药和非孤儿药所使用的证据。这项回顾性横断面分析利用了FDA的批准数据以及来自ClinicalTrials.gov的研究信息,以比较2016年至2023年期间批准的孤儿药和非孤儿药相关研究的特征。在总共批准的368种药物中,50%为孤儿药。与非孤儿药(每种药物2.4项研究)相比,FDA批准孤儿药所依据的研究显著更少(每种药物1.5项研究)。此外,在FDA批准之前完成的孤儿药研究比例显著更低(25%对41%)。孤儿药在随机临床试验(RCT)中接受评估的可能性显著更低(34%对63%)。在这些RCT中,批准前完成的试验显著更少(40%对54%),且公布结果的试验也显著更少(35%对53%)。孤儿药和非孤儿药的现有证据存在显著差异。随着像《治愈法案2.0》这样的新立法的制定,审视加快批准时间表与临床证据标准之间的平衡至关重要。