Patient involvement in clinical trial design can facilitate the recruitment and retention of participants as well as potentially increase the uptake of the tested intervention and the impact of the findings on patient outcomes. Despite these benefits, patients still have very limited involvement in designing and conducting trials in nephrology. Many trials do not address research questions and outcomes that are important to patients, including patient-reported outcomes that reflect how patients feel and function. This limitation can undermine the relevance, reliability and value of trial-based evidence for decision-making in clinical practice and health policy. However, efforts to involve patients with kidney disease are increasing across all stages of the trial process from priority setting, to study design (including selection of outcomes and approaches to improve participant recruitment and retention) and dissemination and implementation of the findings. Harnessing the patient voice in designing trials can ensure that efforts and resources are directed towards patient-centred trials that address the needs, concerns and priorities of patients living with kidney disease with the aim of achieving transformative improvements in care and outcomes.

患者参与临床试验设计可以促进参与者的招募和保留，并可能增加对测试干预的采用以及研究结果对患者结果的影响。尽管有这些好处，但患者参与肾脏病学试验设计和实施的程度仍然非常有限。许多试验没有解决对患者很重要的研究问题和结果，包括反映患者感觉和功能的患者报告结果。这种局限性会破坏基于试验的证据在临床实践和卫生政策决策中的相关性、可靠性和价值。然而，从优先级设置到试验过程的所有阶段，让肾病患者参与的努力都在增加，研究设计（包括选择结果和改善参与者招募和保留的方法）以及研究结果的传播和实施。在设计试验时利用患者的声音可以确保将努力和资源用于以患者为中心的试验，解决肾病患者的需求、担忧和优先事项，以实现护理和结果的变革性改进。