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dc.contributor.authorHaywood, Carlton Jr.
dc.contributor.authorLanzkron, Sophie
dc.contributor.authorDiener-West, Marie
dc.contributor.authorHaythornthwaite, Jennifer
dc.contributor.authorStrouse, John J.
dc.contributor.authorBediako, Shawn
dc.contributor.authorOnojobi, Gladys
dc.contributor.authorBeach, Mary Catherine
dc.contributor.authorIMPORT Investigators
dc.date.accessioned2020-06-15T16:21:48Z
dc.date.available2020-06-15T16:21:48Z
dc.date.issued2014-02-13
dc.description.abstractBackground A substantial number of planned clinical trials for sickle cell disease (SCD) have terminated early due to insufficient patient enrollment. Purpose To describe attitudes toward clinical trials among a sample of adults with SCD and identify patient-level factors associated with these attitudes. Methods Our data came from a sample (N = 291) of primarily adults with SCD participating in the Improving Patient Outcomes with Respect and Trust (IMPORT) study, which is a federally funded observational study of SCD patient experiences in seeking healthcare. Attitudes toward clinical trials were assessed using items from the Perceptions of Participation in Clinical Research instrument. Patient factors examined as potential correlates of clinical trial attitudes were demographics, disease severity, engagement in self-care, trust, healthcare experience ratings, and prior history of participation in clinical trials. Multiple regression analyses were used to identify patient-level correlates of clinical trial attitudes. Results Our sample of SCD patients expressed overwhelmingly favorable attitudes about clinical trials, with 77%–92% of our sample expressing agreement with a series of positive statements about clinical trials in general. Demographics, engagement in self-care, healthcare experience ratings, and prior trial participation each explained significant portions of the variability in clinical trial attitudes. Limitations The generalizability of our results to the entire SCD population may be of concern as the study participants were all receiving care at comprehensive sickle cell centers and already participating in clinical research. Conclusion Our results suggest that, in principle, adults with SCD enrolled in an observational study express very positive general attitudes about clinical trial participation and that specific factors attached to particular clinical trial opportunities may play a greater role in a SCD patient’s decision to participate than a general unwillingness to participate.en_US
dc.description.sponsorshipThe authors thank all members and participants of the IMPORT study for their contributions. The full list of IMPORT investigators includes the authors, as well as the following individuals – Johns Hopkins Investigators: C. Patrick Carroll, MD; Tanita Woodson, Jordan Wilks, Benjamin Ajiboye, Nina Shah. Howard University Investigators: Abiodun Akintilo; Margaret Fadojutimi-Akinsiku; Patricia Oneal, MD; Adriana Medina; Nouraie, Seyed- Mehdi; John Kwagyan; Kemi Owoyemi; and Ronke Ajala. Study data were collected and managed using REDCap electronic data capture tools hosted at Johns Hopkins University. REDCap (Research Electronic Data Capture) is a secure, web-based application designed to support data capture for research studies, providing: 1) an intuitive interface for validated data entry; 2) audit trails for tracking data manipulation and export procedures; 3) automated export procedures for seamless data downloads to common statistical packages; and 4) procedures for importing data from external sources. This study was funded by a grant from the National, Heart, Lung and Blood Institute (NHLBI) (#1R01HL088511-01). Dr. Haywood’s effort was funded by a Career Development Award from the NHLBI (#1K01HL108832-01). Dr. Lanzkron’s effort was funded by a Career Development Award from the NHLBI (#K23HL083089). The funders played no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; or preparation, review, or approval of the manuscript. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. This study was funded by a grant from the National, Heart, Lung and Blood Institute [#1R01HL088511-01]. The efforts of Dr. Haywood and Dr. Lanzkron were funded by Career Development Awards from the National, Heart, Lung, and Blood Institute [Haywood: #1K01HL108832-01; Lanzkron: #K23HL083089]. The funders played no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; or preparation, review, or approval of the manuscript. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.en_US
dc.description.urihttps://journals.sagepub.com/doi/10.1177/1740774513519876en_US
dc.format.extent16 pagesen_US
dc.genrejournal articles postprintsen_US
dc.identifierdoi:10.13016/m28xbk-jz2l
dc.identifier.citationHaywood, Carlton, Sophie Lanzkron, Marie Diener-West, Jennifer Haythornthwaite, John J Strouse, Shawn Bediako, Gladys Onojobi, and Mary Catherine Beach. “Attitudes toward Clinical Trials among Patients with Sickle Cell Disease.” Clinical Trials 11, no. 3 (June 2014): 275–83. doi:10.1177/1740774513519876.en_US
dc.identifier.urihttps://doi.org/10.1177/1740774513519876
dc.identifier.urihttp://hdl.handle.net/11603/18890
dc.language.isoen_USen_US
dc.publisherSAGEen_US
dc.relation.isAvailableAtThe University of Maryland, Baltimore County (UMBC)
dc.relation.ispartofUMBC Psychology Department Collection
dc.relation.ispartofUMBC Faculty Collection
dc.rightsThis item is likely protected under Title 17 of the U.S. Copyright Law. Unless on a Creative Commons license, for uses protected by Copyright Law, contact the copyright holder or the author.
dc.rightsThis is not the final published version. Carlton Haywood, Jr, Sophie Lanzkron, Marie Diener-West, Jennifer Haythornthwaite, John J Strouse, Shawn Bediako, Gladys Onojobi, Mary Catherine Beach, for the IMPORT Investigators, Attitudes toward clinical trials among patients with sickle cell disease,Clinical Trials (Volume Number 11 and Issue Number 3) pp. 275–283. Copyright ©2020 SAGE Publications. DOI: 10.1177/1740774513519876.
dc.titleAttitudes Towards Clinical Trials Among Patients with Sickle Cell Diseaseen_US
dc.typeTexten_US


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