Journal article
The RUDY Study: Using digital technologies to enable a research partnership
- Abstract:
- 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.
- Publication status:
- Published
- Peer review status:
- Peer reviewed
Actions
Authors
- Publisher:
- Nature Publishing Group
- Journal:
- European Journal of Human Genetics More from this journal
- Volume:
- 25
- Pages:
- 816–822
- Publication date:
- 2017-04-01
- Acceptance date:
- 2017-02-17
- DOI:
- EISSN:
-
1476-5438
- ISSN:
-
1018-4813
- Keywords:
- Pubs id:
-
pubs:685234
- UUID:
-
uuid:86be03da-5439-4736-8e82-bf4971a1418e
- Local pid:
-
pubs:685234
- Deposit date:
-
2017-03-10
Terms of use
- Copyright holder:
- Teare et al
- Copyright date:
- 2017
- Notes:
- © The Author(s) 2017. This work is licensed under a Creative Commons Attribution 4.0 International License. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in the credit line; if the material is not included under the Creative Commons license, users will need to obtain permission from the license holder to reproduce the material. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/
- Licence:
- CC Attribution (CC BY)
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