The UK Renal Registry, Learning & Research Building, Southmead Hospital, Bristol, UK.
School of Social and Community Medicine, University of Bristol, Canynge Hall, 39 Whatley Road, Bristol, BS8 2PS, UK.
Pediatr Nephrol. 2018 Mar;33(3):373-380. doi: 10.1007/s00467-017-3688-2. Epub 2017 Jun 22.
A disease registry uses observational study methods to collect defined data on patients with a particular condition for a predetermined purpose. By providing comprehensive standardised data on patients with kidney disease, renal registries aim to provide a 'real world' representation of practice patterns, treatment and patient outcomes that may not be captured accurately by other methods, including randomised controlled trials. Additionally, using registries to measure variations in outcomes and audit care against standards is crucial to understanding how to improve quality of care for patients in an efficacious and cost-effective manner. Registries also have the potential to be a powerful scientific tool that can monitor and support the translational process between research and routine clinical practice, although their limitations must be borne in mind. In this review, we describe the role of the UK Renal Registry as a tool to support translational research. We describe its involvement across each stage of the translational pathway: from hypothesis generation, study design and data collection, to reporting of long-term outcomes and quality improvement initiatives. Furthermore we explore how this role may bring about improvements in care for adults and children with kidney disease.
疾病登记系统采用观察性研究方法，针对特定疾病的患者收集特定目的的明确数据。肾脏登记系统旨在通过提供有关肾病患者的全面标准化数据，提供实践模式、治疗和患者结局的“真实世界”代表性，而这些信息可能无法通过其他方法（包括随机对照试验）准确捕捉。此外，使用登记系统来衡量结果的差异并根据标准审核护理对于了解如何以有效且具有成本效益的方式改善患者的护理质量至关重要。登记系统也有可能成为一种强大的科学工具，可以监测和支持研究与常规临床实践之间的转化过程，但必须牢记其局限性。在这篇综述中，我们描述了英国肾脏登记系统作为支持转化研究的工具的作用。我们描述了它在转化途径的每个阶段的参与情况：从假设生成、研究设计和数据收集，到长期结果报告和质量改进计划。此外，我们探讨了这一角色如何为成年和儿童肾病患者的护理带来改善。
