ArticleClinical and translational science2014
Research participant-centered outcomes at NIH-supported clinical research centers.
Article in Clinical and translational science, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 1 of them a synthesis that pooled it.
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
24 citing papers in PubMed, 1 synthesis or guideline pooled it, 32 citations in OpenAlex.
- Current global practice and implications for future research on disseminating health research results to study participants: A systematic review.PLoS medicine · 2025Pooled it
- Evaluating the utility of a patient and public involvement and engagement (PPIE) end-of-trial event to re-engage with cell-based therapy participants.Regenerative medicine · 2025Trial
- Expressive writing to reduce depressive and anxiety symptoms among sexual minority veterans: Study design for a pilot randomized controlled trial.Contemporary clinical trials communications · 2026Article
- Return of results is important to heterogeneous research participants: A single-site survey.Journal of clinical and translational science · 2026Article
- Characteristics of clinical trials associated with appeal and return on investment to participants: a review and framework.The oncologist · 2025Review
- Standards and infrastructure for multisite deployment of the research participant perception survey.JAMIA open · 2025Article
- Patient-Reported Factors Influencing Clinical Trial Participation: An In-depth Analysis of Patients With Lupus and Rheumatoid Arthritis.ACR open rheumatology · 2025Review
- 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
- What research participants say about their research experiences in Empowering the Participant Voice: Outcomes and actionable data.Journal of clinical and translational science · 2025Article
- 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
- Re: "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
- Fielding the research participant perception survey to evaluate a culturally tailored Latinx cohort study.Journal of clinical and translational science · 2024Article
- Improving patient satisfaction based on service quality in clinical trials: A cross-sectional study.PloS one · 2024Article
- Gathering the Stakeholder's Perspective: Experiences and Opportunities in Rare Genetic Disease Research.Genes · 2023Article
- Building an infrastructure to support the development, conduct, and reporting of informative clinical studies: The Rockefeller University experience.Journal of clinical and translational science · 2023Article
- Article
- An evaluation of the process of informed consent: views from research participants and staff.Trials · 2021Article
- Satisfaction and perceptions of research participants in clinical and translational studies: An urban multi-institution with CTSA.Journal of clinical and translational science · 2020Article
- Participants' awareness of ethical compliance, safety and protection during participation in pharmaceutical industry clinical trials: a controlled survey.BMC medical ethics · 2019Article
- Delivery of the research participant perception survey through the patient portal.Journal of clinical and translational science · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
19 authors at 13 institutions in 2 countries.
Funding
Abstract
backgroundAlthough research participation is essential for clinical investigation, few quantitative outcome measures exist to assess participants' experiences. To address this, we developed and deployed a survey at 15 NIH-supported clinical research centers to assess participant-centered outcomes; we report responses from 4,961 participants.
methodsSurvey questions addressed core aspects of the research participants' experience, including their overall rating, motivation, trust, and informed consent. We describe participant characteristics, responses to individual questions, and correlations among responses.
resultsRespondents broadly represented the research population in sex, race, and ethnicity. Seventy-three percent awarded top ratings to their overall research experience and 94% reported no pressure to enroll. Top ratings correlated with feeling treated with respect, listened to, and having access to the research team (R(2) = 0.80-0.96). White participants trusted researchers more (88%) than did nonwhite participants collectively (80%; p < 0.0001). Many participants felt fully prepared by the informed consent process (67%) and wanted to receive research results (72%).
conclusionsOur survey demonstrates that a majority of participants at NIH-supported clinical research centers rate their research experience very positively and that participant-centered outcome measures identify actionable items for improvement of participant's experiences, research protections, and the conduct of clinical investigation.
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.