ArticleJournal of pediatric hematology/oncology2013
Barriers to hematopoietic cell transplantation clinical trial participation of african american and black youth with sickle cell disease and their parents.
Article in Journal of pediatric hematology/oncology, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 4 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
22 citing papers in PubMed, 4 syntheses or guidelines pooled it, 36 citations in OpenAlex.
- Strategies to increase participant diversity in pediatric research: a systematic review.Pediatric research · 2026Pooled it
- A systematic review and meta synthesis of barriers and facilitators to Black women's participation in healthcare research.BMC medical research methodology · 2026Pooled it
- Balancing benefits and burdens: a systematic review on ethical and social dimensions of gene and cell therapies for hereditary blood diseases.BMC medical ethics · 2025Pooled it
- Hematopoietic stem cell transplantation in thalassemia major and sickle cell disease: indications and management recommendations from an international expert panel.Haematologica · 2014Guideline
- Article
- 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 review on disease modifying pharmacologic therapies for sickle cell disease.Annals of hematology · 2025Review
- 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
- Variability in sickle cell knowledge by sickle cell status.Journal of genetic counseling · 2023Article
- Gene therapy in sickle cell disease: Attitudes and informational needs of patients and caregivers.Pediatric blood & cancer · 2023Article
- How do we best engage young people in decision-making about their health? A scoping review of deliberative priority setting methods.International journal for equity in health · 2023Article
- The perception of pediatric sickle cell anemia patient's caregivers toward hematopoietic stem cell transplantation (single-center experience, Saudi Arabia).Frontiers in pediatrics · 2023Article
- 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
- Effective Recruitment Strategies for a Sickle Cell Patient Registry Across Sites from the Sickle Cell Disease Implementation Consortium (SCDIC).Journal of immigrant and minority health · 2021Article
- Cost-effectiveness of a hypothetical cell or gene therapy cure for sickle cell disease.Scientific reports · 2021Article
- Racial disparities in hematopoietic stem cell transplant: a systematic review of the literature.Stem cell investigation · 2021Review
- Assessment of Patient and Caregiver Attitudes and Approaches to Decision-Making Regarding Bone Marrow Transplant for Sickle Cell Disease: A Qualitative Study.JAMA network open · 2020Article
- Mistrust of Pediatric Sickle Cell Disease Clinical Trials Research.American journal of preventive medicine · 2016Article
- Indications and Results of HLA-Identical Sibling Hematopoietic Cell Transplantation for Sickle Cell Disease.Biology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation · 2016Review
- Communicating Prognosis in Sickle Cell Disease: A Qualitative Study of Adolescents with Sickle Cell Disease, Their Parents and Providers.Annals of pediatrics & child health · 2015Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors at 6 institutions in 1 country.
Funding
Abstract
African Americans and Blacks have low participation rates in clinical trials and reduced access to aggressive medical therapies. Hematopoietic cell transplantation (HCT) is a high-risk but potentially curative therapy for sickle cell disease (SCD), a disorder predominantly seen in African Americans. We conducted focus groups to better understand participation barriers to HCT clinical trials for SCD. Nine focus groups of youth with SCD (n=10) and parents (n=41) were conducted at 3 sites representing the Midwest, South Atlantic, and West South Central US. Main barriers to clinical trial participation included gaps in knowledge about SCD, limited access to SCD/HCT trial information, and mistrust of medical professionals. For education about SCD/HCT trials, participants highly preferred one-on-one interactions with medical professionals and electronic media as a supplement. Providers can engage with sickle cell camps to provide information on SCD/HCT clinical trials to youth and local health fairs for parents/families. Youth reported learning about SCD through computer games; investigators may find this medium useful for clinical trial/HCT education. African Americans affected by SCD face unique barriers to clinical trial participation and have unmet HCT clinical studies education needs. Greater recognition of these barriers will allow targeted interventions in this community to increase their access to HCT.
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.