ArticleBiology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation2014
Participation in clinical research: perspectives of adult patients and parents of pediatric patients undergoing hematopoietic stem cell transplantation.
Article in Biology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers, 1 of them a synthesis that pooled it.
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
23 citing papers in PubMed, 1 synthesis or guideline pooled it, 38 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
- A qualitative exploration of the informed consent process in hematopoietic cell transplantation clinical research and opportunities for improvement.Bone marrow transplantation · 2017Trial
- Pediatric Oncology Clinical Trial Participation Among Families From Historically Marginalized Groups.JAMA network open · 2026Article
- Advancing Equity and Patient Partnership in Clinical Trials for Inflammatory Bowel Disease: A Model for Inclusive Trial Design.Clinical and experimental gastroenterology · 2026Article
- Navigating the decision landscape: understanding interstitial cystitis/bladder pain syndrome patients' motivations and medical support needs for fecal microbiota transplantation: a qualitative research.BMC complementary medicine and therapies · 2025Article
- Parental motivations and perceived barriers to participating in pediatric vaccine clinical trials: Findings from the OCV-S trial in Nepal.Vaccine: X · 2024Article
- Exploring Factors Affecting Acceptance of Fecal Microbiota Transplantation for Patients with Recurrent Urinary Tract Infections: a Descriptive Qualitative Study.Patient preference and adherence · 2024Article
- Effect of Patient-Physician Relationship on Withholding Information Behavior: Analysis of Health Information National Trends Survey (2011-2018) Data.Journal of medical Internet research · 2020Article
- Development of a National Caregiver Health Survey for Hematopoietic Stem Cell Transplant: Qualitative Study of Cognitive Interviews and Verbal Probing.JMIR formative research · 2020Article
- A Mobile Health App (Roadmap 2.0) for Patients Undergoing Hematopoietic Stem Cell Transplant: Qualitative Study on Family Caregivers' Perspectives and Design Considerations.JMIR mHealth and uHealth · 2019Article
- Factors influencing the recruitment of lactating women in a clinical trial involving direct oral anticoagulants: a qualitative study.International journal of clinical pharmacy · 2018Article
- Willingness to Participate in Vaccine-Related Clinical Trials among Older Adults.International journal of environmental research and public health · 2018Article
- Implementation of acute care patient portals: recommendations on utility and use from six early adopters.Journal of the American Medical Informatics Association : JAMIA · 2018Article
- Improving the Informed Consent Process in Hematopoietic Cell Transplantation: Patient, Caregiver, and Provider Perspectives.Biology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation · 2018Article
- BMT Roadmap: A User-Centered Design Health Information Technology Tool to Promote Patient-Centered Care in Pediatric Hematopoietic Cell Transplantation.Biology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation · 2017Article
- Factors affecting willingness to share electronic health data among California consumers.BMC medical ethics · 2017Article
- Sharing Clinical Notes with Hospitalized Patients via an Acute Care Portal.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2017Article
- Quality of Life and Psychopathology in Adults Who Underwent Hematopoietic Stem Cell Transplantation (HSCT) in Childhood: A Qualitative and Quantitative Analysis.Frontiers in psychology · 2017Article
- Innovating consent for pediatric HCT patients.Bone marrow transplantation · 2016Article
- User-Centered Design Groups to Engage Patients and Caregivers with a Personalized Health Information Technology Tool.Biology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation · 2016Article
Corrections and comments
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Authors and funding
6 authors at 1 institution in 1 country.
Funding
Abstract
Despite major improvements over the past several decades, many patients undergoing hematopoietic stem cell transplantations (HSCT) continue to suffer from significant treatment-related morbidity and mortality. Clinical research studies (trials) have been integral to advancing the standard of care in HSCT. However, 1 of the biggest challenges with clinical trials is the low participation rate. Although barriers to participation in cancer clinical trials have been previously explored, studies specific to HSCT are lacking. The current study was undertaken to examine the knowledge, attitudes, and perceptions of HSCT patients regarding clinical trials. As members of focus groups, participants responded to open-ended questions that assessed factors influencing decision-making about HSCT clinical trials. Suggestions for improvements in the recruitment process were also solicited among participants. Seventeen adult HSCT patients and 6 parents of pediatric HSCT patients participated in the study. The median age was 56 years (range, 18 to 70) and 44 years (range, 28 to 54) for adult patients and parents, respectively. Participants universally indicated that too much information was provided within the informed consents and they were intimidated by the medical and legal language. Despite the large amount of information provided to them at the time of study enrollment, the participants had limited knowledge retention and recall of study details. Nevertheless, participants reported overall positive experiences with clinical trial participation and many would readily choose to participate again. A common concern among participants was the uncertainty of study outcome and general lack of feedback about results at the end of the study. Participants suggested that investigators provide more condensed and easier to understand informed consents and follow-up of study findings. These findings could be used to help guide the development of improved consent documents and enhanced participation in research studies, thereby affecting the future design of HSCT research protocols.
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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.