As the United States (U.S.) population rapidly ages, the incidence of Alzheimer's Disease and Related Dementias (ADRDs) is rising, with racial/ethnic minorities affected at disproportionate rates. ...Much research has been undertaken to test, sequence, and analyze genetic risk factors for ADRDs in Caucasian populations, but comparatively little has been done with racial/ethnic minority populations. We conducted a scoping review to examine the nature and extent of the research that has been published about the genetic factors of ADRDs among racial/ethnic minorities in the U.S.
Using an established scoping review methodological framework, we searched electronic databases for articles describing peer-reviewed empirical studies or Genome-Wide Association Studies that had been published 2005-2018 and focused on ADRD-related genes or genetic factors among underrepresented racial/ethnic minority population in the U.S.
Sixty-six articles met the inclusion criteria for full text review. Well-established ADRD genetic risk factors for Caucasian populations including
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have not been studied to the same degree in minority U.S. populations. Compared to the amount of research that has been conducted with Caucasian populations in the U.S., racial/ethnic minority communities are underrepresented.
Given the projected growth of the aging population and incidence of ADRDs, particularly among racial/ethnic minorities, increased focus on this important segment of the population is warranted. Our review can aid researchers in developing fundamental research questions to determine the role that ADRD risk genes play in the heavier burden of ADRDs in racial/ethnic minority populations.
Like cancer, Alzheimer's disease and related dementias (ADRD) comprise a global health burden that can benefit tremendously from the power of disease registry data. With an aging population, the ...incidence, treatment, and mortality from ADRD is increasing and changing rapidly. In the same way that current cancer registries work toward prevention and control, so do ADRD registries. ADRD registries maintain a comprehensive and accurate registry of ADRD within their state, provide disease prevalence estimates to enable better planning for social and medical services, identify differences in disease prevalence among demographic groups, help those who care for individuals with ADRD, and foster research into risk factors for ADRD. ADRD registries offer a unique opportunity to conduct high-impact, scientifically rigorous research efficiently. As research on and development of ADRD treatments continue to be a priority, such registries can be powerful tools for conducting observational studies of the disease. This perspectives piece examines how established cancer registries can inform ADRD registries' impact on public health surveillance, research, and intervention, and inform and engage policymakers.
Alzheimer's disease and related dementias (ADRD) are at the forefront of the United States (US) public health agenda due to their tremendous human and financial burden. Further, disproportionately ...high ADRD rates among racial/ethnic minorities require incorporating the unique perspectives of racially and ethnically diverse scientists, which will necessitate diversifying the scientific workforce that investigates disparities in aging. The purpose of this paper is to describe the training and mentorship initiatives of the National Institute on Aging (NIA)-funded Carolina Center on Alzheimer's Disease and Minority Research, emphasizing lessons learned from our engagement with underrepresented minority and minoritized (URM) Scientists. We highlight three aims of the Center's training and mentorship component: (1) Fund pilot projects for URM Scientists conducting research on sociocultural, behavioral, and environmental factors that influence ADRD-related health disparities; (2) Provide mentorship to build the research capacity of Center Scientists; and (3) Offer research education in Health Disparities and Minority Aging Research to Center Scientists and interested researchers at all partner institutions. Our experience may be a practical resource for others developing interdisciplinary training programs to increase the pipeline of URM Scientists conducting ADRD research.
Background
Alzheimer’s disease and related dementias (ADRD) are at the forefront of the United States (US) public health agenda, with a disproportionate impact on racial/ethnic minorities. Aging ...scholars have called for prioritizing ADRD disparities research and addressing the systems that promote research as essential to achieving equity in healthy aging scholarship. In 2018, the National Institute on Aging (NIA)‐funded, Carolina Center on Alzheimer’s Disease and Minority Research (CCADMR) was founded to increase the diversity of the research workforce in population health and ADRD disparities. The CCADMR provides underrepresented minority (URM), junior/mid‐career faculty scientists with opportunities for pilot grant funding, mentorship by senior faculty, and health disparities‐focused training. We share evaluation findings from the training and mentorship components of the Center.
Method
Using a mixed methods approach, we analyzed data from quarterly scientist progress reports, interviews with mentors and scientists, and health disparities seminar evaluations.
Result
Nine scientists have been chosen as pilot project awardees since Center inception. They represent four academic institutions and have implemented disparities‐focused ADRD research ranging from estimating the prevalence of clusters of multi‐morbidity by ADRD type and race, to understanding the determinants of ADRD for African Americans to inform the development of a social robot to engage the community in ADRD‐related activities. Scientists have presented their research at aging and ADRD‐focused conferences, each with manuscripts currently under development. Qualitative interview data (N=9) show that mentors and scientists feel positively about the CCADMR, particularly the mentorship component. Junior scientists have a strong desire to advance their ADRD research, but they face challenges partly due to their institutions’ emphasis on diversity, which typically force them to assume additional responsibilities, leaving limited time for their research. Evaluation data show that nearly 85% of seminar attendees are greatly satisfied with the speakers and content. Since the conversion to virtual seminars due to the COVID‐19 pandemic, over 90% of attendees report being “very satisfied” with speakers and content.
Conclusion
While the evaluation of CCADMR outcomes is ongoing, our experience may be a practical resource for others developing interdisciplinary training programs to increase the pipeline of URM scientists conducting ADRD research.
In the United States, a disproportionate number of unintended pregnancies occur among African Americans, particularly those in their later teenage years and early 20s. Mobile technology is becoming ...more ubiquitous as a method for health promotion; however, relatively little research has been done with this population to determine their perspectives about unintended pregnancy, the potential of successfully using mobile technology to prevent unintended pregnancy, and the content of such programs.
The purpose of this study was to obtain the perspectives of African American emerging adults about unintended pregnancy and the use of mobile technology to reduce unintended pregnancy rates.
Focus groups and interviews were conducted with 83 African Americans, aged 18-21 years. Data were analyzed using an open coding process. Emergent codes were then added as needed, and themes and subthemes were identified.
Participants cited the social environment and lack of education as primary reasons for disproportionate rates of unintended pregnancy. They noted that unintended pregnancy is an important issue and that they desire more sexual health information. They enthusiastically supported mobile technology as a means to communicate unintended pregnancy prevention programming and offered many suggestions for program content, look, and feel.
Young and emerging adult African Americans want and need sexual health resources, and a mobile-based platform could be widely accepted and address needs to lower disproportionate rates of unintended pregnancy. An essential next step is to use these findings to inform the development of a mobile-based unintended pregnancy prevention and sexual health program prototype to determine feasibility.
The number of people with Alzheimer's disease and related dementias (ADRD) in the United States is steadily increasing, with minoritized populations having a disproportionate burden of disease. One ...strategy to address the racial and ethnic disparities in aging is to diversify scholars in the field of aging, to increase dynamic solution development and create cultural congruence among researchers and participants. The National Institute on Aging has a committed effort to increase and diversify the number of scientists who conduct aging and ADRD research, placing a call for Centers to focus on this effort. In response to the National Institute on Aging call, the Carolina Center for Alzheimer's Disease and Minority Research, housed at the University of South Carolina, proposed a dual approach to addressing these gaps through a joint national conference and mentorship program for underrepresented minoritized faculty. After one year of the program, the participating scholars were surveyed, and successes and growth points of the program were identified to help guide the improvement of this dual approach to addressing gaps in scholar diversity in aging research.
This brief report provides an overview of lessons learned through evaluation of the first five years of the NIA-funded South Carolina-Advancing Diversity in Aging Research (SC-ADAR) undergraduate ...program, whose goal is to increase the number of qualified underrepresented minority (URM) students who pursue scientific graduate studies in programs focusing on medicine, science, technology, engineering, and mathematics and aging. Partnering with five Historically Black Colleges and Universities in South Carolina, we implemented a research training approach that included two consecutive summers of research training in a University of South Carolina faculty laboratory, as part of a comprehensive 24-month research education program. In addition to the mentored research experience in a laboratory, students had coursework in the biology of aging and social gerontology, with additional workshops tailored to emergent student needs including basic academic skills development, work-life management skills, reflective social experiences, and enhanced support in the transition from undergraduate to graduate school. We provide an overview of lessons learned throughout the early program period, and a description of the iterative changes we made in the program in response to this learning, all of which have been incorporated into the existing SC-ADAR program.
This paper presents reflections on mentorship from scientists and mentors of the National Institute on Aging (NIA)-funded Carolina Center on Alzheimer’s Disease and Minority Research (CCADMR). Using ...a network approach to mentoring, this program aims to increase the pipeline of underrepresented minority (URM) scientists studying Alzheimer’s disease (AD) disparities. Six mentors and five scientists participated in interviews. Thematic analysis identified recurring themes; transcripts of mentors and scientists were compared. Most common thematic categories identified by mentors included experience interacting with scientists, goals as a mentor, recruitment of underrepresented minorities, scientists’ challenges, and programmatic qualities. The most mentioned categories by scientists were challenges, seminars, working with mentors, career development, and project experience. The CCADMR will use findings to enhance the experience and training methods for future grant years. Results can benefit other training programs focused on aging and AD.
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