The RUDY study: using digital technologies to enable a research partnership

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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Cooperative Behavior
  • Humans
  • Musculoskeletal Diseases / epidemiology*
  • Musculoskeletal Diseases / psychology
  • Musculoskeletal Diseases / therapy
  • Patient Participation / methods*
  • Professional-Patient Relations
  • Software*
  • Vascular Diseases / epidemiology*
  • Vascular Diseases / psychology
  • Vascular Diseases / therapy