临床试验注册库是ALS/MND（肌萎缩侧索硬化/运动神经元病）患者、临床医生、患者导航人员、倡导组织以及全球试验检索平台所使用信息的主要来源。当注册库信息不准确、不完整或已过时时，患者可能失去参与研究的宝贵机会，研究生态系统的公信力也会受到损害。国际ALS/MND协会联盟认为，准确的注册库信息是一个研究可及性问题，并呼吁申办方、研究者及其他责任方在每一项ALS/MND临床研究的全生命周期内，在试验注册库中维护准确且最新的试验记录。
Clinical trial registries are the primary source of information used by people living with ALS/MND, clinicians, patient navigators, advocacy organizations, and trial-finding platforms worldwide. When registry information is inaccurate, incomplete, or outdated, patients can lose valuable opportunities to participate in research, and confidence in the research ecosystem is undermined. The International Alliance of ALS/MND Associations believes that accurate registry information is a research access issue and calls on sponsors, investigators, and other responsible parties to maintain accurate and current trial records on trial registries throughout the lifecycle of every ALS/MND clinical study.