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The Sangre Por Salud Biobank: Facilitating Genetic Research in an Underrepresented Latino Community

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      Abstract

      Background/Aims: The Sangre Por Salud (Blood for Health; SPS) Biobank was created for the purpose of expanding precision medicine research to include underrepresented Latino patients. It is the result of a unique collaboration between Mayo Clinic and Mountain Park Health Center, a federally qualified community health center in Phoenix, Arizona. This report describes the rationale, development, implementation, and characteristics of the SPS Biobank. Methods: Latino adults (ages 18-85 years) who were active patients within Mountain Park Health Center's internal medicine practice in Phoenix, Ariz., and had no history of diabetes were eligible. Participants provided a personal and family history of chronic disease, completed a sociodemographic, psychosocial, and behavioral questionnaire, underwent a comprehensive cardiometabolic risk assessment (anthropometrics, blood pressure and labs), and provided blood samples for banking. Laboratory results of cardiometabolic testing were returned to the participants and their providers through the electronic health record. Results: During the first 2 years of recruitment into theSPS Biobank, 2,335 patients were approached and 1,432 (61.3%) consented to participate; 1,354 (94.5%) ultimately completed all requisite questionnaires and medical evaluations. The cohort is primarily Spanish-speaking (72.9%), female (73.3%), with a mean age of 41.3 ± 12.5 years. Most participants were born outside of the US (77.9%) and do not have health insurance (77.5%). The prevalence of overweight (35.5%) and obesity (45.0%) was high, as was previously unidentified prediabetes (55.9%), type 2 diabetes (7.4%), prehypertension (46.8%), and hypertension (16.2%). The majority of participants rated their health as good to excellent (72.1%) and, as a whole, described their overall quality of life as high (7.9/10). Conclusion: Collaborative efforts such as the SPS Biobank are critical for ensuring that underrepresented minority populations are included in precision medicine initiatives and biomedical research that seeks to improve human health and reduce the burdens of disease.

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      President Obama has announced a research initiative that aims to accelerate progress toward a new era of precision medicine, with a near-term focus on cancers and a longer-term aim to generate knowledge applicable to the whole range of health and disease.
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        Health planners and policy makers are increasingly asking for a feasible method to identify vulnerable persons with the greatest health needs. We conducted a systematic review of the association between a single item assessing general self-rated health (GSRH) and mortality. Systematic MEDLINE and EMBASE database searches for studies published from January 1966 to September 2003. Two investigators independently searched English language prospective, community-based cohort studies that reported (1) all-cause mortality, (2) a question assessing GSRH; and (3) an adjusted relative risk or equivalent. The investigators searched the citations to determine inclusion eligibility and abstracted data by following a standardized protocol. Of the 163 relevant studies identified, 22 cohorts met the inclusion criteria. Using a random effects model, compared with persons reporting "excellent" health status, the relative risk (95% confidence interval) for all-cause mortality was 1.23 [1.09, 1.39], 1.44 [1.21, 1.71], and 1.92 [1.64, 2.25] for those reporting "good,"fair," and "poor" health status, respectively. This relationship was robust in sensitivity analyses, limited to studies that adjusted for co-morbid illness, functional status, cognitive status, and depression, and across subgroups defined by gender and country of origin. Persons with "poor" self-rated health had a 2-fold higher mortality risk compared with persons with "excellent" self-rated health. Subjects' responses to a simple, single-item GSRH question maintained a strong association with mortality even after adjustment for key covariates such as functional status, depression, and co-morbidity.
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          To assess the experienced or perceived barriers and facilitators to health research participation for major US racial/ethnic minority populations, we conducted a systematic review of qualitative and quantitative studies from a search on PubMed and Web of Science from January 2000 to December 2011. With 44 articles included in the review, we found distinct and shared barriers and facilitators. Despite different expressions of mistrust, all groups represented in these studies were willing to participate for altruistic reasons embedded in cultural and community priorities. Greater comparative understanding of barriers and facilitators to racial/ethnic minorities' research participation can improve population-specific recruitment and retention strategies and could better inform future large-scale prospective quantitative and in-depth ethnographic studies.
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            Author and article information

            Affiliations
            aCenter for Health Promotion and Disease Prevention, College of Nursing and Health Innovation, Arizona State University, and bMountain Park Health Center, Phoenix, Ariz., cDivision of Endocrinology, Department of Internal Medicine, and dCenter for Individualized Medicine, Mayo Clinic Arizona, Scottsdale, Ariz., eDepartment of Health Sciences Research, fBiomedical Ethics Research Program, and gDepartment of Laboratory Medicine and Pathology, Mayo Clinic Rochester, Rochester, Minn., and hCenter for Disparities in Diabetes, Obesity, and Metabolism, Division of Endocrinology, Department of Medicine, University of Arizona, Tucson, Ariz., USA
            Journal
            PHG
            Public Health Genomics
            10.1159/issn.1662-4246
            Public Health Genomics
            Public Health Genomics
            S. Karger AG (Basel, Switzerland karger@123456karger.com http://www.karger.com )
            1662-4246
            1662-8063
            August 2016
            05 July 2016
            : 19
            : 4
            : 229-238
            PHG2016019004229
            10.1159/000447347
            27376364
            Public Health Genomics 2016;19:229-238
            © 2016 S. Karger AG, Basel

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            Figures: 1, Tables: 5, References: 26, Pages: 10
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