ArticleClinical and translational science2011
Assessing research participants' perceptions of their clinical research experiences.
Article in Clinical and translational science, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 60 papers.
What it found
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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
60 citing papers in PubMed.
- Motivations and Decision Making Processes of Men With X-linked Retinoschisis Considering Participation in an Ocular Gene Therapy Trial.American journal of ophthalmology · 2019Trial
- An ounce of prevention: A pre-randomization protocol to improve retention in substance use disorder clinical trials.Addictive behaviors · 2017Trial
- Why do - or don't - patients with urinary tract infection participate in a clinical trial? A qualitative study in German family medicine.German medical science : GMS e-journal · 2015Trial
- Clinical trial participants' experiences of completing questionnaires: a qualitative study.BMJ open · 2014Trial
- Patient experiences in trials of minimally invasive thoracic surgery: A mixed-methods study.Journal of robotic surgery · 2026Article
- Nurse-led risk-based primary healthcare intervention in midlife women's health management in Hong Kong: a stepped-wedge cluster randomized controlled trial protocol.BMC primary care · 2026Article
- Reasons for participation and experiences of women in an antibody-mediated HIV prevention clinical trial in Malawi.The Pan African medical journal · 2026Article
- Parent and child experiences of research participation and retention intentions in a Japanese birth cohort: insights from the Japan Environment and Children's Study (JECS).Environmental health and preventive medicine · 2026Article
- Perceptions of health research participation in rural and urban Pennsylvanians.Journal of clinical and translational science · 2026Article
- Understanding how the informed consent process influences the decision to participate in an adaptive platform trial: A scoping review.PloS one · 2026Article
- Participant and researcher understandings of research responsibilities in malawi: a comparative analysis.BMC medical ethics · 2025Article
- Planning for successful participant recruitment and retention in trials of behavioural interventions: Feasibility randomised controlled trial of the Wrapped intervention.PLOS digital health · 2025Article
- Standards and infrastructure for multisite deployment of the research participant perception survey.JAMIA open · 2025Article
- To increase trust in clinical research: Be worthy of trust and enhance the role of clinical research nurses.Journal of clinical and translational science · 2025Article
- Respectful closure of a CEnR DNA integrity study: A bridge to sustained interactions with research participants.Journal of clinical and translational science · 2025Article
- What research participants say about their research experiences in Empowering the Participant Voice: Outcomes and actionable data.Journal of clinical and translational science · 2025Article
- "There was No Opportunity to Express Good or Bad": Perspectives From Patient Focus Groups on Patient Experience in Clinical Trials.Journal of patient experience · 2024Article
- Community Engagement Strategies for Underrepresented Racial and Ethnic Populations.Mayo Clinic proceedings · 2024Review
- Fielding the research participant perception survey to evaluate a culturally tailored Latinx cohort study.Journal of clinical and translational science · 2024Article
- Empowering the Participant Voice (EPV): Design and implementation of collaborative infrastructure to collect research participant experience feedback at scale.Journal of clinical and translational science · 2024Article
Corrections and comments
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Authors and funding
6 authors.
Funding
Abstract
introductionParticipants' perceptions of their research experiences provide valuable measures of ethical treatment, yet no validated instruments exist to measure these experiences. We conducted focus groups of research participants and professionals as the initial step in developing a validated instrument.
methodsResearch participants enrolled in 12 focus groups, consisting of: (1) individuals with disorders undergoing interventions; (2) in natural history studies; or (3) healthy volunteers. Research professionals participated in six separate groups of: (1) institutional review board members, ethicists, and Research Subject Advocates; (2) research nurses/coordinators; or (3) investigators. Focus groups used standard methodologies.
resultsEighty-five participants and 29 professionals enrolled at eight academic centers. Altruism and personal relevance of the research were commonly identified motivators; financial compensation was less commonly mentioned. Participants were satisfied with informed consent processes but disappointed if not provided test results, or study outcomes. Positive relationships with research teams were valued highly. Research professionals were concerned about risks, undue influence, and informed consent.
conclusionsParticipants join studies for varied, complex reasons, notably altruism and personal relevance. They value staff relationships, health gains, new knowledge, and compensation, and expect professionalism and good organization. On the basis of these insights, we propose specific actions to enhance participant recruitment, retention, and satisfaction.
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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.