ArticleEuropean journal of human genetics : EJHG2017
The RUDY study: using digital technologies to enable a research partnership.
Article in European journal of human genetics : EJHG, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
19 citing papers in PubMed.
- Evaluation of CTRL: a web application for dynamic consent and engagement with individuals involved in a cardiovascular genetic disorders cohort.European journal of human genetics : EJHG · 2024Article
- Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries.Journal of medical Internet research · 2023Article
- A GDPR-Compliant Dynamic Consent Mobile Application for the Australasian Type-1 Diabetes Data Network.Healthcare (Basel, Switzerland) · 2023Article
- What can data trusts for health research learn from participatory governance in biobanks?Journal of medical ethics · 2022Article
- Framework and Practical Guidance for the Ethical Use of Electronic Methods for Communication With Participants in Medical Research.Journal of medical Internet research · 2022Review
- Simulating the Genetics Clinic of the Future - whether undergoing whole-genome sequencing shapes professional attitudes.Journal of community genetics · 2022Article
- The PICASO cloud platform for improved holistic care in rheumatoid arthritis treatment-experiences of patients and clinicians.Arthritis research & therapy · 2021Observational
- Preferences for Updates on General Research Results: A Survey of Participants in Genomic Research from Two Institutions.Journal of personalized medicine · 2021Article
- Reflections on dynamic consent in biomedical research: the story so far.European journal of human genetics : EJHG · 2021Article
- Adding dynamic consent to a longitudinal cohort study: A qualitative study of EXCEED participant perspectives.BMC medical ethics · 2021Review
- Ethical Issues in Consent for the Reuse of Data in Health Data Platforms.Science and engineering ethics · 2021Article
- The practice of active patient involvement in rare disease research using ICT: experiences and lessons from the RUDY JAPAN project.Research involvement and engagement · 2021Article
- Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan: Scoping Review.Journal of medical Internet research · 2020Article
- Fibrous Dysplasia/McCune-Albright Syndrome: A Rare, Mosaic Disease of Gα s Activation.Endocrine reviews · 2020Review
- Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research.PloS one · 2019Article
- Towards a national genomics medicine service: the challenges facing clinical-research hybrid practices and the case of the 100 000 genomes project.Journal of medical ethics · 2018Article
- Equitable Participation in Biobanks: The Risks and Benefits of a "Dynamic Consent" Approach.Frontiers in public health · 2018Article
- Authentication of Patients and Participants in Health Information Exchange and Consent for Medical Research: A Key Step for Privacy Protection, Respect for Autonomy, and Trustworthiness.Frontiers in genetics · 2018Article
- Co-creation with research participants to inform the design of electronic informed consent.Digital healthArticle
Corrections and comments
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Authors and funding
9 authors.
Funding
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.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.