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Overcoming Barriers to Parkinson Disease Trial Participation: Increasing Diversity and Novel Designs for Recruitment and Retention
Neurotherapeutics ( IF 5.6 ) Pub Date : 2020-11-04 , DOI: 10.1007/s13311-020-00960-0
Pavan A Vaswani 1 , Thomas F Tropea 1 , Nabila Dahodwala 1
Affiliation  

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.



中文翻译:


克服帕金森病试验参与的障碍:增加招募和保留的多样性和新颖设计



帕金森病 (PD) 在神经退行性疾病中非常普遍,影响着不同的患者群体。尽管患者普遍愿意参加临床试验,但只有一小部分患者参加。了解参与试验的障碍将有助于缓解这种差异并提高试验参与度。研究中代表性不足的少数族裔、老年患者和患有更多医学合并症的患者尤其不足。在临床试验中,这会延迟试验完成、加剧差异并限制我们推广研究结果的能力。有必要努力改进试验设计和招募,以确保研究入组反映 PD 患者的多样性。在试验设计层面,扩大纳入标准、关注参与者负担并关注试验效率可能会有所帮助。在招聘阶段,通过传统的外展或数字方法提高意识;提高参与度,特别是社区医生的参与度;开展有针对性的招募工作也有助于提高代表性不足的患者群体的入学率。使用技术进行虚拟访问、基于技术的客观测量和社区参与也可以减轻参与者的负担并增加招募。通过设计试验时考虑到这些参与试验的障碍,我们不仅可以提高所有患者获得研究的机会,还可以提高 PD 临床研究的质量和普遍性。

更新日期:2020-11-05
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