Journal ArticleDOI
African American Participation in Health-Related Research Studies: Indicators for Effective Recruitment
Rosalyn Lang,Vinaya Kelkar,Jennifer R. Byrd,Christopher L. Edwards,Margaret A. Pericak-Vance,Goldie S. Byrd +5 more
TLDR
In this paper, the African American Alzheimer disease research study group at North Carolina A&T State University designed an in-person questionnaire and surveyed more than 700 African American adults on their willingness to participate in health-related research studies.Citations
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Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research.
Stephanie A. Kraft,Mildred K. Cho,Katherine Gillespie,Meghan C. Halley,Nina Varsava,Kelly E. Ormond,Harold S. Luft,Benjamin S. Wilfond,Sandra Soo-Jin Lee +8 more
TL;DR: Several considerations for research institutions seeking to cultivate long-term, trusting relationships with patients are suggested: address the role of history and experience on trust, engage concerns about potential group harm, address cultural values and communication barriers, and integrate patient values and expectations into oversight and governance structures.
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A paradigm for understanding trust and mistrust in medical research: The Community VOICES study.
Meg Smirnoff,Ilene Wilets,Deborah Fish Ragin,R. Adams,J. Holohan,Rosamond Rhodes,G. Winkel,Edmund M. Ricci,Cindy Clesca,Lynne D. Richardson +9 more
TL;DR: This model offers a conceptual basis for the design of tailored interventions that target specific groups to promote trust of individual researchers and research institutions as well as to facilitate broader research participation.
Journal ArticleDOI
Participation of African Americans in e-Health and m-Health Studies: A Systematic Review
TL;DR: There was a low representation of AA in the studies in this review, and researchers must go beyond the traditional one-size-fits-all approach to determine what mixture of incentives and recruitment/retention strategies would work best for a particular health condition, population group, or community.
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Underrepresentation of African-Americans in Alzheimer's Trials: A Call for Affirmative Action.
TL;DR: Dementia, especially Alzheimer's disease (AD), has emerged as one of the biggest threats to public health and personal wellbeing among older adults and in coming decades minority population, including African-Americans, may exceed the Caucasian population in the U.S.
Journal ArticleDOI
Connect MM Registry: The Importance of Establishing Baseline Disease Characteristics
Robert M. Rifkin,Rafat Abonour,Howard R. Terebelo,Jatin J. Shah,Cristina Gasparetto,James W. Hardin,Shankar Srinivasan,Rosanna J. Ricafort,Yasir Nagarwala,Brian G.M. Durie +9 more
TL;DR: This analysis provides insight into the demographic and disease characteristics of NDMM patients in a range of clinical practices by creating solid records of baseline patient disease characteristics using suggested NCCN diagnostic work-up and IMWG criteria.
References
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Derivation of new readability formulas (Automated Readability Index, Fog Count and Flesch Reading Ease Formula) for Navy enlisted personnel ; Research Branch Report 8-75
TL;DR: Three readability formulas were recalculated to be more suitable for Navy use and resulted in a scaled reading grade level based on Navy personnel reading Navy training material and comprehending it.
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Distrust, Race, and Research
TL;DR: Race remained strongly associated with a higher distrust score and even after controlling for markers of social class, African Americans were less trusting than white Americans.
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Barriers to recruiting underrepresented populations to cancer clinical trials: a systematic review.
Jean G. Ford,Mollie W. Howerton,Gabriel Y. Lai,Tiffany L. Gary,Shari Bolen,M. Chris Gibbons,Jon C. Tilburt,Charles Baffi,Teerath Peter Tanpitukpongse,Renee F Wilson,Neil R. Powe,Eric B Bass +11 more
TL;DR: The results indicated that underrepresented populations face numerous barriers to participation in cancer‐related trials, and the available evidence had limitations in quality regarding representativeness, justification of study methods, the reliability and validity of data‐collection methods, potential for bias, and data analysis.
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Attitudes about Racism, Medical Mistrust, and Satisfaction with Care among African American and White Cardiac Patients
TL;DR: Multivariate analysis found that the perception of racism and mistrust of the medical care system led to less satisfaction with care and when perceived racism and medical mistrust were controlled, race was no longer a significant predictor of satisfaction.
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Race and trust in the health care system.
L. Ebony Boulware,L. Ebony Boulware,Lisa A. Cooper,Lisa A. Cooper,Lloyd E. Ratner,Thomas A. LaVeist,Neil R. Powe +6 more
TL;DR: In this paper, the authors analyzed responses to a cross-sectional telephone survey to assess the independent relationship of self-reported race (non-Hispanic black or non-Hispanic white) with trust in physicians, hospitals, and health insurance plans.