Introduction: Despite evidence that Hispanic/Latino populations are 1.5 times more likely than non-Latino Whites to develop Alzheimer's disease and related dementias (ADRD), Latinos are underrepresented in clinical trials testing treatments for ADRD. Data are needed on facilitators of ADRD clinical trial participation in Latinos. We leveraged in-depth qualitative methods to elucidate barriers and facilitators to participating in ADRD clinical trials in a large and diverse sample of Latinos; and to provide timely and actionable strategies to accelerate representation of Latinos in clinical trials on ADRD. Methods: Data were collected in California between January 2019 and June 2020 from 25 focus groups (FGs): eight with Latino adults ages 18 to 49 (n = 54), nine with Latino adults ages 50+ (n = 75), and eight with caregivers of Latino older adults with ADRD (n = 52). Twelve community-based organization administrators were also interviewed. Transcripts of FGs and interviews were entered into Atlas.ti software.Three independent team members analyzed the transcripts with inductive/deductive qualitative content analysis. We triangulated data from stakeholder groups across sites, we used collaborative coding, and used the Consolidated Criteria for Reporting Qualitative Research.Results: An overarching theme was a tension between wanting to learn more about ADRD and to participate in ADRD research but having limited awareness and opportunity. Five themes were identified: (1) remaining in limbo, (2) wanting information about ADRD, (3) wanting information on research about ADRD, (4) clearing researchers through trusted local organizations, and (5) practicing altruism through engagement in research opportunities.Discussion: To increase representation of Latino communities in clinical trials on ADRD, bilingual information and education on ADRD and clinical trials needs to be better disseminated. Also, working with trusted local, regional, and nationalThis is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.

Pseudoxanthoma elasticum (PXE) is an autosomal recessive disorder characterized by the mineralization of connective tissues in the body. Primary manifestation of PXE occurs in the tissues of the skin, eyes, and cardiovascular system. PXE is primarily caused by mutations in the ABCC6 gene. The ABCC6 gene encodes the trans-membrane protein ABCC6, which is highly expressed in the kidneys and liver. PXE has high phenotypic variability, which may possibly be affected by several modifier genes. Disease advocacy organizations have had a pivotal role in bringing rare disease research to the forefront and in helping to sustain research funding for rare genetic diseases in order to help find a treatment for these diseases, pseudoxanthoma elasticum included. Because of these initiatives, individuals affected by these conditions benefit by being scientifically informed about their condition, having an effective support mechanism, and also by contributing to scientific research efforts and banking of biological samples. This rapid progress would not have been possible without the aid of disease advocacy organizations such as PXE International.

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Physical activity (PA) has been associated with a multitude of beneficial mental and physical outcomes. It is well documented, however, that there are health disparities and inequities for segments of the population, especially as related to PA. Engagement of traditionally minoritized populations into research is essential for justice in health. We discuss a community engagement model that can be used for recruiting and retaining traditionally minoritized populations into PA research, and then we go into three major ethnic/racial groups in the United States: Latinos, African Americans, and Asian Americans. Background information of each group, cultural values that play a role in health for each of the groups, and research demonstrating how culture plays a role in the formation and implementation of PA interventions in these groups is presented.