Teare Harriet J A, Hogg Joanna, Kaye Jane, Luqmani Raashid, Rush Elaine, Turner Alison, Watts Laura, Williams Melanie, Javaid M Kassim
HeLEX Centre, Nuffield Department of Population Health, University of Oxford, Oxford, UK.
Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK.
Eur J Hum Genet. 2017 Jun;25(7):816-822. doi: 10.1038/ejhg.2017.57. Epub 2017 Apr 26.
Patients have extensive experience of their disease that can enhance the design and execution of research leading to significant innovations and efficiencies in the research process. The research community on the whole have been slow to adopt practices that enable patients to become active partners in research. Digital technologies are providing the means to do this more easily and so are increasingly being used to interact with patients and involve them in the design and execution of research. The RUDY (Rare UK Diseases of bone, joints and blood vessels) study's pioneering approach applies a custom-developed electronic platform where patients can contribute information over time about their disease experience, lifestyle and clinical history. This is combined with a state-of-the-art Dynamic Consent model and a commitment to patient-driven research, to further our understanding of rare diseases. This paper describes the RUDY study and the benefits that have been gained from adopting this partnership approach to research.
患者对自身疾病有着丰富的经验，这能够提升研究的设计与实施水平，从而在研究过程中带来重大创新并提高效率。总体而言，研究界在采用能使患者成为研究中积极伙伴的做法方面进展缓慢。数字技术正提供了更便捷地做到这一点的手段，因此越来越多地被用于与患者互动，并让他们参与研究的设计与实施。鲁迪（英国骨骼、关节和血管罕见病）研究的开创性方法应用了一个定制开发的电子平台，患者可以随着时间推移提供有关其疾病经历、生活方式和临床病史的信息。这与最先进的动态同意模型以及对患者驱动研究的承诺相结合，以增进我们对罕见病的了解。本文描述了鲁迪研究以及采用这种合作式研究方法所获得的益处。
