Department of Neurology, University of Pennsylvania, Philadelphia, PA, USA.
Neurotherapeutics. 2020 Oct;17(4):1724-1735. doi: 10.1007/s13311-020-00960-0. Epub 2020 Nov 4.
Parkinson disease (PD) is highly prevalent among neurodegenerative diseases, affecting a diverse patient population. Despite a general willingness of patients to participate in clinical trials, only a subset of patients enroll in them. Understanding the barriers to trial participation will help to alleviate this discrepancy and improve trial participation. Underrepresented minorities, older patients, and patients with more medical comorbidities in particular are underrepresented in research. In clinical trials, this has the effect of delaying trial completion, exacerbating disparities, and limiting our ability to generalize study results. Efforts to improve trial design and recruitment are necessary to ensure study enrollment reflects the diversity of patients with PD. At the trial design level, broadening inclusion criteria, attending to participant burden, and focusing on trial efficiency may help. At the recruitment stage, increasing awareness, with traditional outreach or digital approaches; improving engagement, particularly with community physicians; and developing targeted recruitment efforts can also help improve enrollment of underrepresented patient groups. The use of technology, for virtual visits, technology-based objective measures, and community engagement, can also reduce participant burden and increase recruitment. By designing trials to consider these barriers to trial participation, we can improve not only the access to research for all our patients but also the quality and generalizability of clinical research in PD.
帕金森病（PD）是一种高度流行的神经退行性疾病，影响着各种不同的患者群体。尽管患者普遍愿意参与临床试验，但只有一部分患者参与其中。了解参与试验的障碍将有助于缓解这种差异，提高试验参与度。代表性不足的少数群体、老年患者和合并更多医疗合并症的患者在研究中代表性不足。在临床试验中，这会导致试验完成延迟、加剧差异，并限制我们将研究结果推广的能力。需要努力改进试验设计和招募工作，以确保研究纳入的患者反映 PD 患者的多样性。在试验设计层面，可以通过扩大纳入标准、关注患者负担和关注试验效率来实现。在招募阶段，可以通过传统的外展或数字方法提高认识，特别是提高社区医生的参与度，并开展有针对性的招募工作，也可以帮助增加代表性不足的患者群体的入组率。还可以通过使用技术来减少参与者的负担并增加招募，例如虚拟就诊、基于技术的客观测量和社区参与。通过设计考虑到这些参与试验障碍的试验，我们不仅可以提高所有患者参与研究的机会，还可以提高 PD 临床研究的质量和普遍性。
