ArticleApplied & translational genomics2012
Participant-Centric Initiatives: Tools to Facilitate Engagement In Research.
Article in Applied & translational genomics, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 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
22 citing papers in PubMed.
- Impact and experience of participant engagement activities in supporting dapivirine ring use among participants enrolled in the phase III MTN-020/ASPIRE study.BMC public health · 2021Trial
- Dynamic governance: A new era for consent for stem cell research.Stem cell reports · 2024Review
- Patient and public involvement in research: a review of practical resources for young investigators.BMC rheumatology · 2023Review
- Long-term participant retention and engagement patterns in an app and wearable-based multinational remote digital depression study.NPJ digital medicine · 2023Article
- An Alternative to the Light Touch Digital Health Remote Study: The Stress and Recovery in Frontline COVID-19 Health Care Workers Study.JMIR formative research · 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
- Taking patient involvement seriously: a critical ethical analysis of participatory approaches in data-intensive medical research.BMC medical informatics and decision making · 2019Article
- Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019Article
- User Perspectives of a Web-Based Data-Sharing Platform (Open Humans) on Ethical Oversight in Participant-Led Research: Protocol for a Quantitative Study.JMIR research protocols · 2018Article
- Participant-Partners in Genetic Research: An Exome Study with Families of Children with Unexplained Medical Conditions.Journal of participatory medicine · 2018Article
- Participant-Centric Initiatives and Medical Research: Scoping Review Protocol.JMIR research protocols · 2017Article
- Framework for Advancing the Reporting of Patient Engagement in Rheumatology Research Projects.Current rheumatology reports · 2017Review
- Review
- The significant impact of education, poverty, and race on Internet-based research participant engagement.Genetics in medicine : official journal of the American College of Medical Genetics · 2017Article
- Dynamic Consent: a potential solution to some of the challenges of modern biomedical research.BMC medical ethics · 2017Article
- Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives.BMC medical ethics · 2016Article
- Respecting Autonomy Over Time: Policy and Empirical Evidence on Re-Consent in Longitudinal Biomedical Research.Bioethics · 2016Article
- Personalized Telehealth in the Future: A Global Research Agenda.Journal of medical Internet research · 2016Article
- When Participants in Genomic Research Grow Up: Contact and Consent at the Age of Majority.The Journal of pediatrics · 2016Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
Abstract
Clinical genomic research faces increasing challenges in establishing participant privacy and consent processes that facilitate meaningful choice and communication capacity for longitudinal and secondary research uses. There are an evolving range of participant-centric initiatives that combine web-based informatics tools with new models of engagement and research collaboration. These emerging initiatives may become valuable approaches to support large-scale and longitudinal research studies. We highlight and discuss four types of emerging initiatives for engaging and sustaining participation in research.
Indexed as
Identifiers
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.