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1.
Artigo em Inglês | MEDLINE | ID: mdl-31083298

RESUMO

African Americans, other minorities and underserved populations are consistently under- represented in clinical trials. Such underrepresentation results in a gap in the evidence base, and health disparities. The ABC Cardiovascular Implementation Study (CVIS) is a comprehensive prospective cohort registry that integrates social determinants of health. ABC CVIS uses real world clinical practice data to address critical gaps in care by facilitating robust participation of African Americans and other minorities in clinical trials. ABC CVIS will include diverse patients from collaborating ABC member private practices, as well as patients from academic health centers and Federally Qualified Health Centers (FQHCs). This paper describes the rationale and design of the ABC CVIS Registry. The registry will: (1) prospectively collect socio-demographic, clinical and biospecimen data from enrolled adults, adolescents and children with prioritized cardiovascular diseases; (2) Evaluate the safety and clinical outcomes of new therapeutic agents, including post marketing surveillance and pharmacovigilance; (3) Support National Institutes of Health (NIH) and industry sponsored research; (4) Support Quality Measures standards from the Center for Medicare and Medicaid Services (CMS) and Commercial Health Plans. The registry will utilize novel data and technology tools to facilitate mobile health technology application programming interface (API) to health system or practice electronic health records (EHR). Long term, CVIS will become the most comprehensive patient registry for underserved diverse patients with cardiovascular disease (CVD) and co morbid conditions, providing real world data to address health disparities. At least 10,000 patients will be enrolled from 50 sites across the United States.


Assuntos
Negro ou Afro-Americano/estatística & dados numéricos , Determinantes Sociais da Saúde/estatística & dados numéricos , Populações Vulneráveis/estatística & dados numéricos , Georgia , Humanos , Estudos Prospectivos , Sistema de Registros
2.
Ethn Dis ; 29(Suppl 1): 135-144, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30906162

RESUMO

The Research Centers in Minority Institutions (RCMI) program was established by the US Congress to support the development of biomedical research infrastructure at minority-serving institutions granting doctoral degrees in the health professions or in a health-related science. RCMI institutions also conduct research on diseases that disproportionately affect racial and ethnic minorities (ie, African Americans/Blacks, American Indians and Alaska Natives, Hispanics, Native Hawaiians and Other Pacific Islanders), those of low socioeconomic status, and rural persons. Quantitative metrics, including the numbers of doctoral science degrees granted to underrepresented students, NIH peer-reviewed research funding, peer-reviewed publications, and numbers of racial and ethnic minorities participating in sponsored research, demonstrate that RCMI grantee institutions have made substantial progress toward the intent of the Congressional legislation, as well as the NIH/NIMHD-linked goals of addressing workforce diversity and health disparities. Despite this progress, nationally, many challenges remain, including persistent disparities in research and career development awards to minority investigators. The continuing underrepresentation of minority investigators in NIH-sponsored research across multiple disease areas is of concern, in the face of unrelenting national health inequities. With the collaborative network support by the RCMI Translational Research Network (RTRN), the RCMI community is uniquely positioned to address these challenges through its community engagement and strategic partnerships with non-RCMI institutions. Funding agencies can play an important role by incentivizing such collaborations, and incorporating metrics for research funding that address underrepresented populations, workforce diversity and health equity.


Assuntos
Pesquisa Comportamental , Pesquisa Biomédica , Grupos Minoritários , Saúde das Minorias , Pesquisa Translacional Biomédica , Pesquisa Comportamental/métodos , Pesquisa Comportamental/organização & administração , Pesquisa Biomédica/métodos , Pesquisa Biomédica/organização & administração , Diversidade Cultural , Etnicidade/educação , Etnicidade/estatística & dados numéricos , Disparidades nos Níveis de Saúde , Humanos , Grupos Minoritários/educação , Grupos Minoritários/estatística & dados numéricos , Saúde das Minorias/educação , Saúde das Minorias/etnologia , Pesquisadores , Apoio à Pesquisa como Assunto , Pesquisa Translacional Biomédica/métodos , Pesquisa Translacional Biomédica/organização & administração , Estados Unidos , Recursos Humanos
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