Trial reportPediatric blood & cancer2013
Exploring barriers and facilitators to clinical trial enrollment in the context of sickle cell anemia and hydroxyurea.
Trial report in Pediatric blood & cancer, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers, 5 of them syntheses 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
26 citing papers in PubMed, 5 syntheses or guidelines pooled it, 45 citations in OpenAlex.
- Pooled it
- Motivations of children and their parents to participate in drug research: a systematic review.European journal of pediatrics · 2016Pooled it
- Systematic review of interventional sickle cell trials registered in ClinicalTrials.gov.Clinical trials (London, England) · 2015Pooled it
- A systematic review of known mechanisms of hydroxyurea-induced fetal hemoglobin for treatment of sickle cell disease.Expert review of hematology · 2015Pooled it
- Strategies addressing barriers to clinical trial enrollment of underrepresented populations: a systematic review.Contemporary clinical trials · 2014Pooled it
- Challenges and Strategies: Nationwide Data Collection for an Internet-based Guided Relaxation Intervention in Sickle Cell Disease.Pain management nursing : official journal of the American Society of Pain Management Nurses · 2025Trial
- Recruiting and retaining parents in behavioral intervention trials: Strategies to consider.Contemporary clinical trials · 2021Trial
- Prevention of conversion to abnormal transcranial Doppler with hydroxyurea in sickle cell anemia: A Phase III international randomized clinical trial.American journal of hematology · 2015Trial
- Immune parameter analysis of children with sickle cell disease on hydroxycarbamide or chronic transfusion therapy.British journal of haematology · 2015Trial
- Underutilisation of hydroxyurea in sickle cell disease: a global scoping review of multilevel barriers and facilitators.Journal of community genetics · 2026Review
- Clinical Practice Patterns for Discussing Hydroxyurea Initiation With Families of Children With Sickle Cell Disease.Pediatric blood & cancer · 2026Article
- Measuring (Mis)trust in the age of COVID-19: viewpoints of vaccine clinical trial participation among individuals living with sickle cell disease.BMC public health · 2025Article
- A patient-centered, theory-guided approach to examining the barriers and enablers to trial participation among people with SCD.Journal of sickle cell disease · 2025Article
- Health-related quality of life with standard and curative therapies in thalassemia: A narrative literature review.Annals of the New York Academy of Sciences · 2024Review
- Article
- Process and strategies for patient engagement and outreach in the Sickle Cell Disease (SCD) community to promote clinical trial participation.Journal of the National Medical Association · 2022Article
- Clinical trial considerations in sickle cell disease: patient-reported outcomes, data elements, and the stakeholder engagement framework.Hematology. American Society of Hematology. Education Program · 2021Review
- Efficient Clinical Counseling for Sickle Cell Disease.Journal of the National Medical Association · 2021Review
- Barriers to Participation in Therapeutic Clinical Trials as Perceived by Community Oncologists.JCO oncology practice · 2020Article
- Integration of Mobile Health Into Sickle Cell Disease Care to Increase Hydroxyurea Utilization: Protocol for an Efficacy and Implementation Study.JMIR research protocols · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundSeveral sickle cell clinical trials have closed due to inability to enroll patients. To limit the early cessation of a proposed clinical trial due to low accrual rates, we sought to better understand barriers and facilitators to enrolling parents of children with sickle cell anemia (SCD) into clinical trials. PROCEDURE: Focus groups (n = 3) were conducted with parents/guardians (n = 14) who had not previously been recruited for a clinical trial and were not administering hydroxyurea to their children.
resultsThree main themes related to barriers to clinical trial enrollment were identified during analysis of focus groups: general barriers to health related research (general mistrust of research studies, emotional and practical concerns), barriers to trial design (randomization), and barriers to hydroxyurea (long term unknown risks, cancer, myelosuppressive effects). Facilitators identified were need for more education, including request for peer education, and improved explanation of clinical trials or study rationale.
conclusionEngagement of parents/guardians of children with SCD in identifying barriers and facilitators to clinical trial enrollment may be critical to the development of strategies to enhance SCD trial completion.
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.