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The overall goal of the Alzheimers Disease Neuroimaging Initiative (ADNI) is to optimize and validate biomarkers for clinical trials while sharing all data and biofluid samples with the global scientific community. ADNI has been instrumental in standardizing and validating amyloid beta (Aβ) and tau positron emission tomography (PET) imaging. ADNI data were used for the US Food and Drug Administration (FDA) approval of the Fujirebio and Roche Elecsys cerebrospinal fluid diagnostic tests. Additionally, ADNI provided data for the trials of the FDA-approved treatments aducanumab, lecanemab, and donanemab. More than 6000 scientific papers have been published using ADNI data, reflecting ADNIs promotion of open science and data sharing. Despite its enormous success, ADNI has some limitations, particularly in generalizing its data and findings to the entire US/Canadian population. This introduction provides a historical overview of ADNI and highlights its significant accomplishments and future vision to pioneer the clinical trial of the future focusing on demographic inclusivity. HIGHLIGHTS: The Alzheimers Disease Neuroimaging Initiative (ADNI) introduced a novel model for public-private partnerships and data sharing. It successfully validated amyloid and Tau PET imaging, as well as CSF and plasma biomarkers, for diagnosing Alzheimers disease. ADNI generated and disseminated vital data for designing AD clinical trials.

The Alzheimers Disease Neuroimaging Initiative (ADNI) Administrative Core oversees and coordinates all ADNI activities, to ensure the success and maximize the impact of ADNI in advancing Alzheimers disease (AD) research and clinical trials. It manages finances and develops policies for data sharing, publications using ADNI data, and access to ADNI biospecimens. The Core develops and executes pilot projects to guide future ADNI activities and identifies key innovative methods for inclusion in ADNI. For ADNI4, the Administrative Core collaborates with the Engagement, Clinical, and Biomarker Cores to develop and evaluate novel, digital methods and infrastructure for participant recruitment, screening, and assessment of participants. The goal of these efforts is to enroll 500 participants, including > 50% from underrepresented populations, 40% with mild cognitive impairment, and 80% with elevated AD biomarkers. This new approach also provides a unique opportunity to validate novel methods. HIGHLIGHTS: The Alzheimers Disease Neuroimaging Initiative (ADNI) Administrative Core oversees and coordinates all ADNI activities. The overall goal is to ensure ADNIs success and help design future Alzheimers disease (AD) clinical trials. A key innovation is data sharing without embargo to maximize scientific impact. For ADNI4, novel, digital methods for recruitment and assessment were developed. New methods are designed to improve the participation of underrepresented populations.

INTRODUCTION: The Alzheimers Disease Neuroimaging Initiative-4 (ADNI-4) Engagement Core was launched to advance Alzheimers disease (AD) and AD-related dementia (ADRD) health equity research in underrepresented populations (URPs). We describe our evidence-based, scalable culturally informed, community-engaged research (CI-CER) model and demonstrate its preliminary success in increasing URP enrollment. METHODS: URPs include ethnoculturally minoritized, lower education (≤ 12 years), and rural populations. The CI-CER model includes: (1) culturally informed methodology (e.g., less restrictive inclusion/exclusion criteria, sociocultural measures, financial compensation, results disclosure, Spanish Language Capacity Workgroup) and (2) inclusive engagement methods (e.g., the Engagement Core team; Hub Sites; Community-Science Partnership Board). RESULTS: As of April 2024, 60% of ADNI-4 new in-clinic enrollees were from ethnoculturally or educationally URPs. This exceeds ADNI-4s ≥ 50% URP representation goal for new enrollees but may not represent final enrollment. DISCUSSION: Findings show a CI-CER model increases URP enrollment in AD/ADRD clinical research and has important implications for clinical trials to advance health equity. HIGHLIGHTS: The Alzheimers Disease Neuroimaging Initiative-4 (ADNI-4) uses a culturally informed, community-engaged research (CI-CER) approach. The CI-CER approach is scalable and sustainable for broad, multisite implementation. ADNI-4 is currently exceeding its inclusion goals for underrepresented populations.

INTRODUCTION: We evaluated preliminary feasibility of a digital, culturally-informed approach to recruit and screen participants for the Alzheimers Disease Neuroimaging Initiative (ADNI4). METHODS: Participants were recruited using digital advertising and completed digital surveys (e.g., demographics, medical exclusion criteria, 12-item Everyday Cognition Scale [ECog-12]), Novoic Storyteller speech-based cognitive test). Completion rates and assessment performance were compared between underrepresented populations (URPs: individuals from ethnoculturally minoritized or low education backgrounds) and non-URPs. RESULTS: Of 3099 participants who provided contact information, 654 enrolled in the cohort, and 595 completed at least one assessment. Two hundred forty-seven participants were from URPs. Of those enrolled, 465 met ADNI4 inclusion criteria and 237 evidenced possible cognitive impairment from ECog-12 or Storyteller performance. URPs had lower ECog and Storyteller completion rates. Scores varied by ethnocultural group and educational level. DISCUSSION: Preliminary results demonstrate digital recruitment and screening assessment of an older diverse cohort, including those with possible cognitive impairment, are feasible. Improving engagement and achieving educational diversity are key challenges. HIGHLIGHTS: A total of 654 participants enrolled in a digital cohort to facilitate ADNI4 recruitment. Culturally-informed digital ads aided enrollment of underrepresented populations. From those enrolled, 42% were from underrepresented ethnocultural and educational groups. Digital screening tools indicate > 50% of participants likely cognitively impaired. Completion rates and assessment performance vary by ethnocultural group and education.

AbstractIn this paper, we address how digital technologies could be effective in fostering equity, diversity, and inclusion (EDI) among children and youth, as well as parents and teachers, by integrating social-emotional learning (SEL). The focus of SEL is on nurturing the social and emotional awareness and skills of students, including the ability to recognize and manage emotions, develop caring and concern for others, make responsible decisions, establish positive relationships, and handle challenging situations effectively. Despite research suggesting the benefits of promoting SEL competencies, the integration of SEL into EDI education, especially through digital technologies, is still undervalued and underrepresented. In particular, we are interested in addressing the potential contributions of SEL-based digital programs, considering two underrepresented populations: inclusion of newcomers (i.e. immigrants and international students) and sexual and gender diverse students. [ABSTRACT FROM AUTHOR]

• 85% of children did not meet recommended glycemic targets. • Black children had significantly higher glycemic levels. • HbA1c was significantly associated with child reports of perceived stress. • Cortisol and IL-8 may mediate the relationship between perceived stress and HbA1c. The purpose of this quantitative study was to consider factors that may negatively impact glycemic levels in Black and White children 8–12 years old with a diagnosis of type 1 diabetes mellitus. Perceived stress, diabetes distress, morning and afternoon salivary cortisol, inflammatory biomarkers, and hemoglobin A1c (HbA1c) were measured in this quantitative, cross-sectional phase of a larger, mixed methods study. Thirty-four children and their parents completed self-report surveys, and children provided blood and salivary samples, to examine effect sizes of relationships among variables of interest. Most children did not meet ADA recommendations for HbA1c. HbA1c was higher in Black children. Medium-to-large effects were noted between perceived stress and HbA1c. Cortisol and IL-8 may mediate the relationship between perceived stress and HbA1c in children. Understanding causes of elevated glycemic levels in children, especially from low-income and underrepresented populations, may help tailor diabetes management interventions to improve health outcomes. [ABSTRACT FROM AUTHOR]

Spinal muscular atrophy (SMA) has been reported in both Amish and Mennonite (Plain) communities, and a higher incidence has been observed in certain Mennonite communities compared to the general population. There are several therapies for SMA, but all are most effective in pre‐symptomatic newborns. To identify couples from the Wisconsin Plain community who are most likely to have a child with SMA, carrier screening is offered via mailed kits with at‐home specimen collection. Our survey data about Plain families' perspectives on genetic testing suggest educational materials are needed for individuals providing informed consent with at‐home specimen collection. We therefore developed a Plain population‐specific educational trifold brochure about SMA carrier screening by incorporating existing medical education strategies and feedback from Plain community members and their health care providers. Along with the brochure, surveys were included in the kits to assess baseline knowledge about SMA carrier screening ("pre‐education") as well as improvement in knowledge after reviewing the brochure and cultural appropriateness of the brochure ("post‐education"). Fifty‐five testing kits were distributed, and 26 survey pairs (pre‐ and post‐education) were returned and analyzed (response rate 47%). Respondents had high baseline knowledge with an average of 5 of 7 questions (71%) answered correctly on the pre‐education survey. Knowledge improved after reviewing the brochure as the average score increased to 6.5 of 7 questions (93%) answered correctly. Questions about risks of having an affected child after positive or negative carrier screening showed the most improvement from the pre‐education to post‐education surveys. Most respondents indicated the brochure was helpful, was easy to understand, and contained the right amount of information. Overall, incorporating elements of existing medical education strategies with feedback from the target population and stakeholders about appropriate language seems to be an effective method for creating beneficial, culturally responsive educational materials for the Plain population. [ABSTRACT FROM AUTHOR]

Access to genomic sequencing (GS) and resulting recommendations have not been well described in pediatric oncology. GS results may provide a cancer predisposition syndrome (CPS) diagnosis that warrants screening and specialist visits beyond cancer treatment, including testing or surveillance for family members. The Texas KidsCanSeq (KCS) Study evaluated implementation of GS in a diverse pediatric oncology population. We conducted semi‐structured interviews (n = 20) to explore experiences of KCS patients' families around learning about a CPS diagnosis and following up on recommended care. We used qualitative content analysis to develop themes and subthemes across families' descriptions of their experiences accessing care and to understand which factors presented barriers and/or facilitators. We found participants had difficulty differentiating which follow‐up care recommendations were made for their child's current cancer treatment versus the CPS. In families' access to follow‐up care for CPS, organizational factors were crucial: travel time and distance were common hardships, while coordination of care to streamline multiple appointments with different providers helped facilitate CPS care. Financial factors also impacted families' access to CPS‐related follow‐up care: having financial assistance and insurance were facilitators for families, while costs and lack of insurance posed as barriers for patients who lost coverage during transitions from pediatric to adult care, and for adult family members who had no coverage. Factors related to beliefs and perceptions, specifically perceiving the risk as less salient to them and feeling overwhelmed with the patient's cancer care, presented barriers to follow‐up care primarily for family members. Regarding social factors, competing life priorities made it difficult for families to access follow‐up care, though having community support alleviated these barriers. We suggest interventions to improve coordination of cancer treatment and CPS‐related care and adherence to surveillance protocols for families as children age, such as care navigators and integrating longitudinal genetic counseling into hereditary cancer centers. [ABSTRACT FROM AUTHOR]

In the past decade, prenatal cell‐free DNA screening (cfDNA) has become ubiquitous as a screening tool for fetal aneuploidy and sex chromosomes. Healthcare provider (HCP) discussions and public perceptions of sex and gender uniquely impact transgender and gender diverse (TGD) individuals, and existing cfDNA guidelines lack recommendations regarding how to discuss sex and gender prenatally. The aim of this exploratory qualitative study was to examine TGD individuals' opinions regarding fetal sex chromosome disclosure sessions. Twelve semi‐structured virtual interviews were conducted with TGD individuals regarding their perspectives on the discussion of fetal sex chromosomes by HCPs within the prenatal setting. Interviews were coded and analyzed using a reflexive thematic approach, generating four major themes: (1) Current practices in prenatal care exclude gender diverse people; (2) HCPs' responsibility to de‐gender discussions of sex chromosomes in prenatal care; (3) HCPs' responsibility to acknowledge gender diversity; and (4) HCPs' influence on societal perceptions of sex and gender. More guidance is needed from professional societies regarding best practices for HCP discussions of sex chromosomes, sex, and gender. Participants recommended HCPs educate patients about sex chromosomes and their relevance to health while avoiding the conflation of sex and gender terms. Additionally, there is an acute need for trans‐inclusive prenatal healthcare. Ultimately, HCPs' and organizations are in a prime position to deconstruct rigid gender binaries and promote societal inclusion of TGD people. [ABSTRACT FROM AUTHOR]

Genetic medicine is considered a major part of the future of preventative care, offering evidence‐based, effective interventions to improve health outcomes and reduce morbidity and mortality, especially regarding hereditary cancer screening. Identification of individuals who would benefit from screening is key to improving their cancer‐related healthcare outcomes. However, patients without insurance, of historically underserved races, of lower socioeconomic status, and in rural communities have lower access to such care. Barriers to access lead to populations having higher rates of undetected hereditary cancer, and consequently more severe forms of cancer. With an already‐established reach, student‐run free clinics can work with genetic counseling training programs to incorporate genetic medicine into their workflow. Such partnerships will (1) make genetic care more accessible with goals of improving patient morbidity, mortality, and health outcomes, (2) offer robust educational experiences for genetic counseling learners, particularly in understanding social determinants of health and barriers to care, and (3) actively combat the growing racial and geographic gaps in genetic care. Our study presents how one student‐run free clinic implemented genetic counseling into its primary care workflow to improve access to genetics services. We present two examples of how genetic counseling improved patients' medical care. We also identify obstacles encountered during this program's development, as well as solutions—those we incorporated and possible considerations for other clinics. With the hope that other clinics can use this paper to design similar partnerships, we aim to lessen the gap between sickness and screening. [ABSTRACT FROM AUTHOR]

Breast cancer is the most common cancer in women in the United States (U.S.) and the leading cause of cancer related death among U.S. Hispanics/Latinas (H/Ls). H/Ls have lower rates of screening and longer time to follow up after an abnormal mammogram. We developed a comprehensive community health educator (promotores)-led education and risk identification program for Spanish-speaking H/Ls in California to increase mammography screening, genetic testing, and the understanding of the impact of family history on cancer risk. Due to COVID-19, we adapted the program to a virtual platform. The experience of transforming the program to a virtual platform provided unique opportunities for collaboration between researchers, community partners, and participants. Promotores are major partners in community based participatory research and in the provision of health care services, but their voices are often excluded from scientific reports. This commentary is an effort to provide a platform for promotores to share their experiences and for the readers to understand their approach in bridging the gap between health care services and communities.

Sumbul Yousafi, Pavani Rangachari, Margaret L Holland Department of Population Health and Leadership, University of New Haven, West Haven, CT, USACorrespondence: Pavani Rangachari, Email prangachari@newhaven.eduBackground: Although US research agencies have instituted peer review processes to require participant diversity in clinical trials before funding decisions are made, the underrepresentation of certain populations (eg, racial and ethnic minorities) in clinical trials remains a persistent challenge in biomedical research. This issue has the potential to affect the generalizability of findings and impede efforts to ensure the provision of high-quality healthcare across all populations. In this study, we examined barriers to the recruitment and retention of underrepresented populations in cancer clinical trials from the perspective of research coordinating staff.Methods: Semi-structured interviews were conducted at a US-based academic cancer center and included 6 patient-facing staff (clinical research coordinators) and 6 non-patient-facing staff (regulatory and financial specialists). Interview data were subjected to thematic analysis. To provide additional organizational context, descriptive data were obtained on the characteristics of clinical trials undertaken at the cancer center.Results: The following themes emerged from the staff interviews: 1) absence of a consistent structure for decision-making and problem-solving related to recruitment and retention, 2) staff shortages, 3) administrative burden, and 4) lack of resources. In addition, descriptive data revealed that nearly half the trials, 64/134 (48%), offered informed consent only in English, and only 3/134 (2%) offered participant incentives or reimbursement (eg, for transportation). These interrelated organizational issues were indicative of inadequate systems for ensuring diverse and equitable representation in cancer clinical trials.Conclusion: Results indicate that overcoming barriers to underrepresentation may require dedicated support from sponsoring agencies in the form of evidence-based guidelines, learning collaboratives to facilitate implementation, technical support, resources, and oversight. For progress to be made therefore, both sponsors and cancer centers may need to assume joint responsibility for the implementation of effective systems for ensuring diverse and equitable representation in cancer clinical trials.Keywords: clinical trials, academic cancer centers, underrepresented populations, recruitment and retention, health disparities, diversity, equity, inclusion

Through the years, research has described the importance of community-based approaches in the management of coastal and marine ecosystems. Coastal and marine issues are multifaceted and require place-specific approaches developed in partnership with vulnerable communities who are impacted by environmental stressors. Place-based conservation, a management approach that focuses on unique, place-specific characteristics, and other similar methods. It considers the need to integrate human dimensions and location-centered approaches, which are often lacking in typical natural resource management. Meaningful engagement with underrepresented communities can holistically account for socioeconomic factors and cultural knowledge that inform best management practices. As the health of marine and coastal ecosystems is linked with environmental quality and local livelihoods, engaging practitioners with knowledge of these systems can support science and trust in environmental management. This article discusses the importance of community-based research, local insight, various examples of successful management, and culturally relevant knowledge to advance sustainable place-based conservation. [ABSTRACT FROM AUTHOR]

Purpose: Regular participation in bicycling offers many health benefits. Universities throughout the U.S. have a large proportion of underrepresented populations among students/employees (e.g., racial/ethnic minorities, LGBTQ+, disabled) who participate in cycling at lower rates. The purpose of this study was to understand the current practices of universities for implementing equitable bicycling programming to their students/faculty/staff. Methods: A volunteer sample of U.S. university bicycle representatives (n = 19) were interviewed to analyze current practices, barriers, motivators, and future tools for equitable programming. Results: Multiple themes emerged from the interview, including barriers to programming such as lack of personnel and finances, as well as motivators such as partnering with off-campus organizations and connecting community/university infrastructures. Conclusions: Although various barriers exist for universities which may present decreased equitable programming, university bicycle/alternative transportation departments should consider partnering with on and off-campus organizations rooted into underrepresented populations to better provide equitable programming to these populations. [ABSTRACT FROM AUTHOR]

Although a lack of diversity in genetic studies is an acknowledged obstacle for personalized medicine and precision public health, Latin American populations remain particularly understudied despite their heterogeneity and mixed ancestry. This gap extends to COVID-19 despite its variability in susceptibility and clinical course, where ethnic background appears to influence disease severity, with non-Europeans facing higher hospitalization rates. In addition, access to high-quality samples and data is a critical issue for personalized and precision medicine, and it has become clear that the solution lies in biobanks. The creation of the Chilean COVID-19 Biorepository reported here addresses these gaps, representing the first nationwide multicentric Chilean initiative. It operates under rigorous biobanking standards and serves as one of South America's largest COVID cohorts. A centralized harmonization strategy was chosen and included unified standard operating procedures, a sampling coding system, and biobanking staff training. Adults with confirmed SARS-CoV-2 infection provided broad informed consent. Samples were collected to preserve blood, plasma, buffy coat, and DNA. Quality controls included adherence to the standard preanalytical code, incident reporting, and DNA concentration and absorbance ratio 260/280 assessments. Detailed sociodemographic, health, medication, and preexisting condition data were gathered. In five months, 2262 participants were enrolled, pseudonymized, and sorted by disease severity. The average Amerindian ancestry considering all participant was 44.0% [SD 15.5%], and this value increased to 61.2% [SD 19.5%] among those who self-identified as Native South Americans. Notably, 279 participants self-identified with one of 12 ethnic groups. High compliance (>90%) in all assessed quality controls was achieved. Looking ahead, our team founded the COVID-19 Genomics Network (C19-GenoNet) focused on identifying genetic factors influencing SARS-CoV-2 outcomes. In conclusion, this bottom-up collaborative effort aims to promote the integration of Latin American populations into global genetic research and welcomes collaborations supporting this endeavor. Interested parties are invited to explore collaboration opportunities through our catalog, accessible online. [ABSTRACT FROM AUTHOR]

This narrative review aims to frame the historical context of American Indian/Alaska Native (AI/AN) pediatric intensive care and offers suggestions for mitigating the impact of unique social drivers. Recent literature was surveyed to determine pertinent studies describing intensive care outcomes in AI/AN children and was summarized in a narrative review. American Indian/Alaska Native people experience disproportionate health inequites due to unique social drivers of health, including settler colonialism, historical trauma, and systemic racism. These factors contribute to inequities in the pediatric intensive care experience, including rates of admission for injury and infectious diseases and mortality due to injuries and following cardiac surgery. These inequities are understudied and require dedicated evaluation. Institutions and providers are responsible for educating, modeling, and providing culturally competent care and aiming to achieve workforce equity to improve outcomes for AI/AN children receiving intensive care. [ABSTRACT FROM AUTHOR]

The first genetic counseling (GC) graduate training program was established in the United States (U.S.) in 1969 and GC is an emerging field of healthcare in many countries. Each year, at least 7% of applicants to U.S.-based GC graduate programs come from countries outside the U.S. ("international GC applicants"). To address the unique needs of international GC applicants, volunteers from the International Special Interest Group (ISIG) of the National Society of Genetic Counselors (NSGC) launched a semi-structured mentorship program (the "International Genetic Counseling Mentorship Program" (IGCMP)) in 2021, which provides individualized mentorship and optional group activities for networking and learning. Fifty-two people from 19 countries signed up for the IGCMP across three application cycles. Of these, 47 were eligible to participate as mentees, and most were interested in one-on-one virtual meetings with international GCs in the U.S. (n = 41/47, 87.2%). An assessment form was sent to 17 mentees who applied to GC graduate school after participating in the first or second cycle of the IGCMP. Of the 12 responses received, 10 (83.3%) reported being extremely satisfied with their individual mentor(s), and the one-on-one meeting with a mentor was considered helpful to both the application and interview process by nine (75.0%) respondents. Importantly, feedback about program improvement revealed an interest in connecting with additional international applicants and mentors and all respondents expressed interest in receiving mentorship throughout graduate school. Future directions include collaborating with other mentorship and graduate programs to further enhance support for international applicants. [ABSTRACT FROM AUTHOR]

Background: Addressing disparities in blood pressure control must include supporting antihypertensive medication adherence (MA). Developing effective MA interventions requires identifying the most important factors influencing MA. Objective: In this review, the authors aimed to meta-analyze the results of research testing associations between factors potentially influencing antihypertensive MA and assessed antihypertensive MA in historically underrepresented populations. Additional exploratory analyses focused on system-level factors, which have been understudied and may particularly impact disparities inMA. Methods: A health sciences librarian assisted with searching across 10 databases. Inclusion criteria included (1) published in English, (2) sample of adults with hypertension, (3) ≥50% of participants having self-identified as a race/ethnicity underrepresented in the country where the study was conducted, and (4) reporting sufficient data to calculate effect size(s). Results: Fifty-eight studies were eligible for inclusion. Nine factors met criteria for planned analyses. Older age (r = 0.08, P < .01; k = 26 studies) and higher income (r = 0.11, P = .01; k = 15) were significantly correlated with better MA. Having depressive symptoms was significantly correlated with worse MA (r = -0.18, P < .01; k = 11). Effect sizes for sex, education level, marital status, number of medications, comorbidities, and perceived social support were not significant. System-level factors examined included insurance coverage, access to healthcare, perceived barriers, having a primary care provider, perceptions of their healthcare provider, and experiences of discrimination in healthcare. Conclusions: Understanding the impact of factors associated with antihypertensive MA in historically underrepresented adults can support development of targeted, culturally relevant MA interventions. Future research should examine the impact of system-level factors on antihypertensive MA among historically underrepresented populations. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic was one of the deadliest global public health events. In the United States, over 1.1 million individuals have died, and now COVID-19 is the third leading cause of death (CDC, 2023). Vaccine uptake has stalled among different demographics. Vaccine hesitancy, a delay in accepting or refusing vaccines, poses a significant challenge regardless of the availability of safe and effective COVID-19 vaccines. This study aimed to identify disparate COVID-19 vaccine uptake among individuals in Western New York. The primary objective was to identify the factors contributing to lower rates of COVID-19 vaccination within this population. Data were collected from 585 adults recruited from 20 Niagara and Erie Counties sites using a self-administered survey on vaccine hesitancy, vaccination status, and COVID-19-related characteristics. The survey included the adult Vaccine Hesitancy Scale (aVHS) and acquired information on demographic characteristics and COVID-19 impact, knowledge, and information sources. Data were analyzed using descriptive statistics, a chi-squared test, a Wilcoxon rank-sum test, and a logistic regression model. Findings suggest that unvaccinated participants (n = 35) were concerned about vaccine side effects (48.6%). For vaccinated/unboosted participants (n = 52), they (40.0%) reported clinical concerns. After adjusting for gender and age, healthcare provider guidance and family guidance remained significant predictors of vaccination status, while clinical research studies were significant predictors of booster status. Findings from this study suggest public health interventions that target vaccine education and facilitate well-informed decisions about COVID-19 vaccines lead to less vaccine hesitancy. [ABSTRACT FROM AUTHOR]

This Open Forum is relevant for investigators who conduct research with historically understudied and marginalized populations. The authors introduce a U.S. Department of Veterans Affairs clinical trial that experienced challenges with recruitment of African American or Black veterans and was terminated for not achieving its recruitment goals. The role of power dynamics in clinical research is discussed, specifically how unequal distributions of power may create recruitment challenges. The authors summarize three lessons learned and offer recommendations for sharing power equitably between investigators and potential participants. By recounting these experiences, the authors seek to promote culturally sensitive, veteran-centered approaches to recruitment in future clinical trials. [ABSTRACT FROM AUTHOR]

A person's phenotypic sex (i.e., endogenous expression of primary, secondary, and endocrinological sex characteristics) can impact crucial aspects of genetic assessment and resulting clinical care recommendations. In studies with genetics components, it is critical to collect phenotypic sex, information about current organ/tissue inventory and hormonal milieu, and gender identity. If researchers do not carefully construct data models, transgender, gender diverse, and sex diverse (TGSD) individuals may be given inappropriate care recommendations and/or be subjected to misgendering, inflicting medical and psychosocial harms. The recognized need for an inclusive care experience should not be limited to clinical practice but should extend to the research setting, where researchers must build an inclusive experience for TGSD participants. Here, we review three TGSD participants in the Family History and Cancer Risk Study (FOREST) to critically evaluate sex‐ and gender‐related survey measures and associated data models in a study seeking to identify patients at risk for hereditary cancer syndromes. Furthermore, we leverage these participants' responses to sex‐ and gender identity‐related questions in FOREST to inform needed changes to the FOREST data model and to make recommendations for TGSD‐inclusive genetics research design, data models, and processes. [ABSTRACT FROM AUTHOR]

Genetic counseling outcomes are influenced by the processes and strategies used by counselors, yet little is known about how these strategies directly impact patients and populations. In particular, tailoring genetic counseling consultations to best meet the needs of cultural, racial, and ethnically diverse populations has been explored. This review aims to identify genetic counseling strategies tailored for a diversity of racial and ethnic populations with the goal to find ways to improve genetic counseling outcomes. Medline, Cochrane CENTRAL, Embase, PsychInfo, and CINAHL databases were searched for original research articles published in English that employed genetic counseling processes and strategies to improve genetic counseling outcomes, specifically for participants from ethnically or racially diverse populations. A review of 5300 titles and abstracts resulted in the identification of 36 articles that met the inclusion criteria. Three themes emerged: (1) community involvement in culturally tailoring genetic counseling, (2) creation and use of culturally tailored resources, and (3) modifications to the genetic counseling process. The effectiveness of genetic counseling strategies could not be evaluated due to lack of consistent outcome measures in the articles. The involvement of diverse ethnic and racial populations in developing inclusive genetic counseling tools and practices will help the profession provide better patient care in the future. More research connecting genetic counseling processes and outcomes will help to assess how well these modified approaches meet the needs of diverse populations. [ABSTRACT FROM AUTHOR]

Since 2005, engineering identity models have emerged within the literature. This publication further examines a systematic literature review conducted to conceptualize engineering identity theory by two independent researchers. The systematic literature review uncovered undergraduate student research. especially underrepresented populations, in higher education between 2005-2019. This analysis explores the origins of engineering identity theory and identity models used in its evolution. This analysis contains an in-depth examination of 43 sources and a detailed explanation of the scope, methods. and categorizations provided in the previous publication. Authors concluded that research on engineering identity can improve by (1) adopting uniformity across terms and factors that are easily identified; (2) recognizing, understanding, and building upon the depth and breadth of research in disciplines other than engineering: (3) correlating engineering identity factors with student success and retention: (4) designing valid measurement instruments specific to engineering identity: and (5) incorporating standards for robust measures. including control or comparison groups. Gaps in literature and future research recommendations are discussed. [ABSTRACT FROM AUTHOR]

This article explores the role of underrepresented populations in polygenic risk scores (PRS) for predicting the risk of neurodegenerative diseases. Neurodegenerative diseases, such as Alzheimer's and Parkinson's, have a significant impact on global health, particularly in underrepresented populations. However, most genetic research and GWAS studies have focused on populations of European ancestry, leading to a lack of diversity in the data. PRS, which combines genetic susceptibility variants, can be used to estimate an individual's risk of developing a disease. However, there are challenges in applying PRS to underrepresented populations due to differences in genetic architecture and ancestry. Efforts are being made to improve the transferability of PRS across diverse populations and incorporate ancestry-specific genetic information. The text discusses the importance of including underrepresented populations (URPs) in genetic research, particularly in the context of polygenic risk scores (PRS) and genome-wide association studies (GWAS). It highlights the increasing efforts to include URPs in genomic studies through the establishment of biobanks and disease-specific consortia in various regions, such as Asia, Africa, Latin America, and Europe. The inclusion of URPs is crucial for understanding disease etiology, identifying population-specific risk variants, and improving disease prediction accuracy. The text also emphasizes the need for standardized databases that represent the global population and the integration of environmental and lifestyle factors in risk prediction models. The given document is a list of references for various scientific articles related to genetic research on neuro [Extracted from the article]

Human leukocyte antigen (HLA) molecules and their relationships with natural killer (NK) cells, specifically through their interaction with killer-cell immunoglobulin-like receptors (KIRs), exhibit robust associations with the outcomes of diverse diseases. Moreover, genetic variations in HLA and KIR immune system genes offer limitless depths of complexity. In recent years, a surge of high-powered genome-wide association studies (GWASs) utilizing single nucleotide polymorphism (SNP) arrays has occurred, significantly advancing our understanding of disease pathogenesis. Additionally, advances in HLA reference panels have enabled higher resolution and more reliable imputation, allowing for finer-grained evaluation of the association between sequence variations and disease risk. However, it is essential to note that the majority of these GWASs have focused primarily on populations of Caucasian and Asian origins, neglecting underrepresented populations in Latin America and Africa. This omission not only leads to disparities in health care access but also restricts our knowledge of novel genetic variants involved in disease pathogenesis within these overlooked populations. Since the KIR and HLA haplotypes prevalent in each population are clearly modelled by the specific environment, the aim of this review is to encourage studies investigating HLA/KIR involvement in infection and autoimmune diseases, reproduction, and transplantation in underrepresented populations. [ABSTRACT FROM AUTHOR]

Background/Aims: The SARS-CoV-2 pandemic disproportionately impacted communities with lower access to health care in the United States, particularly before vaccines were widely available. These same communities are often underrepresented in clinical trials. Efforts to ensure equitable enrollment of participants in trials related to treatment and prevention of Covid-19 can raise concerns about exploitation if communities with lower access to health care are targeted for recruitment. Methods: To enhance equity while avoiding exploitation, our site developed and implemented a three-part recruitment strategy for pediatric Covid-19 vaccine studies. First, we publicized a registry for potentially interested participants. Next, we applied public health community and social vulnerability indices to categorize the residence of families who had signed up for the registry into three levels to reflect the relative impact of the pandemic on their community: high, medium, and low. Finally, we preferentially offered study participation to interested families living in areas categorized by these indices as having high impact of the Covid-19 pandemic on their community. Results: This approach allowed us to meet goals for study recruitment based on public health metrics related to disease burden, which contributed to a racially diverse study population that mirrored the surrounding community demographics. While this three-part recruitment strategy improved representation of minoritized groups from areas heavily impacted by the Covid-19 pandemic, important limitations were identified that would benefit from further study. Conclusion: Future use of this approach to enhance equitable access to research while avoiding exploitation should test different methods to build trust and communicate with underserved communities more effectively. [ABSTRACT FROM AUTHOR]

Previous studies have identified factors that influence genetic counseling applicants' decisions to initially apply to certain schools. However, research on the factors that influence their Genetic Counseling Admissions Match (GCAM) rank order preferences are limited. The purpose of this study was to investigate these factors via an online survey sent to current students and recent graduates who participated in the GCAM. Participants (N = 415) were asked to rank factors within six categories (faculty, students, didactic curriculum, clinical training, cost of attendance, and general program information) on a 7‐point Likert scale. Factors related to clinical training were most influential to applicants (M = 5.68), while factors related to didactic training were least influential to applicants (M = 4.63). Several significant differences existed between underrepresented and overrepresented applicants; overrepresented was defined as White, non‐Hispanic female. Underrepresented applicants were more influenced by the diversity of program faculty (p = 0.016), students (p ≤ 0.001), and the location/patient population (p = 0.003), while overrepresented applicants are more influenced by program graduation and board pass rates (p = 0.021). The results of our study suggest that GCAM rank preferences are influenced by a large number of factors. Additionally, by demonstrating significant differences in the influence of program diversity on underrepresented applicants, the results of our study suggest that JEDI efforts of genetic counseling training programs should continue to be an area of focus, in order to create a more welcoming environment for all students and to further diversify the genetic counseling profession. [ABSTRACT FROM AUTHOR]

IntroductionThe Alzheimer's Disease Neuroimaging Initiative (ADNI) aims to validate biomarkers for Alzheimer's disease (AD) clinical trials. To improve generalizability, ADNI4 aims to enroll 50-60% of its new participants from underrepresented populations (URPs) using new biofluid and digital technologies. ADNI4 has received funding from the National Institute on Aging beginning September 2022.MethodsADNI4 will recruit URPs using community-engaged approaches. An online portal will screen 20,000 participants, 4000 of whom (50-60% URPs) will be tested for plasma biomarkers and APOE. From this, 500 new participants will undergo in-clinic assessment joining 500 ADNI3 rollover participants. Remaining participants (∼3500) will undergo longitudinal plasma and digital cognitive testing. ADNI4 will add MRI sequences and new PET tracers. Project 1 will optimize biomarkers in AD clinical trials.Results and discussionADNI4 will improve generalizability of results, use remote digital and blood screening, and continue providing longitudinal clinical, biomarker, and autopsy data to investigators.

Cardiovascular disease (CVD) is the leading cause of death worldwide, but prevalence estimates in former professional athletes are limited. HUDDLE (Heart Health: Understanding and Diagnosing Disease by Leveraging Echocardiograms) aimed to raise awareness and estimate the prevalence of CVD and associated risk factors among members of the National Football League (NFL) Alumni Association and their families through education and screening events. HUDDLE was a multicity, cross-sectional study of NFL alumni and family members aged 50 years and older. Subjects reported their health history and participated in CVD education and screening (blood pressure, electrocardiogram, and transthoracic echocardiogram [TTE] assessments). Phone follow-up by investigators occurred 30 days postscreening to review results and recommendations. This analysis focuses on former NFL athletes. Of 498 participants screened, 57.2% (N = 285) were former NFL players, the majority of whom were African American (67.6%). The prevalence of hypertension among NFL alumni was estimated to be 89.8%, though only 37.5% reported a history of hypertension. Of 285 evaluable participants, 61.8% had structural cardiac abnormalities by TTE. Multivariable analysis showed that hypertension was a significant predictor of clinically relevant structural abnormalities on TTE. HUDDLE identified a large discrepancy between participant self-awareness and actual prevalence of CVD and risk factors, highlighting a significant opportunity for population health interventions. Structural cardiac abnormalities were observed in most participants and were independently predicted by hypertension, affirming the role of TTE for CVD screening in this population aged older than 50 years. (Heart Health: Understanding and Diagnosing Disease by Leveraging Echocardiograms [HUDDLE]; NCT05009589) [Display omitted] [ABSTRACT FROM AUTHOR]

This mixed-methods study investigated the pandemic's impact on gifted identification among Arkansas's demographic groups and gifted services. The provision of gifted services during the pandemic varied, leading to differences in instructional practices and technology access. Nomination and identification processes were disrupted, hindering the recognition of giftedness, especially among underrepresented populations, and this was reflected in the identification numbers. Participants indicated that the pandemic has led to decreased funding for gifted programs, reduced administrator support, less time for students to participate in gifted classes, and increased responsibilities for gifted teachers. These factors have left teachers feeling overwhelmed and resulted in decreased student engagement, more behavioral issues, and academic struggles. The diversion of resources and priorities away from gifted education further exacerbated the inequities in gifted programs. [ABSTRACT FROM AUTHOR]

The Centers for Disease Control and Prevention affirm that health equity is only achieved when everyone has opportunities to attain full health potential without disadvantages related to social position or socially determined circumstances. To reduce health inequities in nursing research, researchers must increase diversity in study samples and ensure that study participants are representative of all populations in the United States. Identifying effective methods for recruiting underrepresented populations must be a thoughtful and reflective component of every research methodology. To achieve health equity in research studies, nurse researchers and clinicians must carefully plan ways to recruit study participants who represent all populations. [ABSTRACT FROM AUTHOR]

For two decades, a growing body of research surrounding engineering identity has emerged as an indicator for interest and persistence in engineering. The purpose of this quick reference guide using a systematic literature process is to identify the scope of work regarding the development of engineering identity as a concept, specifically within undergraduate student populations in higher education (2005-2019). The original literature review focused search criteria on studies that examine underrepresented populations and their ability to navigate multiple identities within engineering enculturated environments. This work was conducted by two independent researchers and coded based on a systematic review process. Search terms for the review included: "identity" AND "engineering", with refined search terms "women", "women of color", "underrepresented" and NOT "STEM" as explained in the paper. The review included 649 titles in the initial search and resulted in 43 final studies categorized into three tables. This quick reference of engineering identity literature can be utilized to reference past research, specifically in the field of engineering in higher education. The literature review was conducted on articles written prior to 2020 due to the timeline required to describe populations from a retrospective study. Researchers concluded that engineering identity research was 1) difficult to discern due to lack of uniformity across terms and factors that are easily identified and 2) contained gaps in literature, especially for studies that claimed to understand women and underrepresented populations. A summary of research is provided to provide a quick reference and comparisons of research populations, themes, and gaps. [ABSTRACT FROM AUTHOR]

Modern humans originated in Africa 300,000 yr ago, and before leaving their continent of origin, they underwent a process of intense diversification involving complex demographic dynamics. Upon exiting Africa, different populations emerged on the four other inhabited continents, shaped by the interplay of various evolutionary processes, such as migrations, founder effects, and natural selection. Within each region, continental populations, in turn, diversified and evolved almost independently for millennia. As a backdrop to this diversification, introgressions from archaic species contributed to establishing different patterns of genetic diversity in different geographic regions, reshaping our understanding of our species' variability. With the increasing availability of genomic data, it has become possible to delineate the subcontinental human population structure precisely. However, the bias toward the genomic research focused on populations from the global North has limited our understanding of the real diversity of our species and the processes and events that guided different human groups throughout their evolutionary history. This perspective is part of a series of articles celebrating 40 yr since our journal, Molecular Biology and Evolution , was founded (Russo et al. 2024). The perspective is accompanied by virtual issues, a selection of papers on human diversification published by Genome Biology and Evolution and Molecular Biology and Evolution. [ABSTRACT FROM AUTHOR]

The landscape of payment for genetic testing has been changing, with an increase in the number of laboratories offering testing, larger panel offerings, and lower prices. To determine the influence of payer coverage and out-of-pocket costs on the ordering of NGS panel tests for hereditary cancer in diverse settings, we conducted semi-structured interviews with providers who conduct genetic counseling and order next-generation sequencing (NGS) panels purposefully recruited from 11 safety-net clinics and academic medical centers (AMCs) in California and North Carolina, states with diverse populations and divergent Medicaid expansion policies. Thematic analysis was done to identify themes related to the impact of reimbursement and out-of-pocket expenses on test ordering. Specific focus was put on differences between settings. Respondents from both safety-net clinics and AMCs reported that they are increasingly ordering panels instead of single-gene tests, and tests were ordered primarily from a few commercial laboratories. Surprisingly, safety-net clinics reported few barriers to testing related to cost, largely due to laboratory assistance with prior authorization requests and patient payment assistance programs that result in little to no patient out-of-pocket expenses. AMCs reported greater challenges navigating insurance issues, particularly prior authorization. Both groups cited non-coverage of genetic counseling as a major barrier to testing. Difficulty of access to cascade testing, particularly for family members that do not live in the United States, was also of concern. Long-term sustainability of laboratory payment assistance programs was a major concern; safety-net clinics were particularly concerned about access to testing without such programs. There were few differences between states. In conclusion, the use of laboratories with payment assistance programs reduces barriers to NGS panel testing among diverse populations. Such programs represent a major change to the financing and affordability of genetic testing. However, access to genetic counseling is a barrier and must be addressed to ensure equity in testing.

This study used secondary data from a randomized controlled trial of a Brief Motivational Intervention (BMI) to examine whether Non-White participants had different treatment results compared to White participants. The outcome variables of this study were divided into primary outcomes (heavy drinking and consequences associated with alcohol use) and secondary outcomes (cognitive variables such as motivation to change alcohol use, and behavioral variables, including protective behavioral strategies). Linear regression analyses were conducted with the PROCESS macro for SPSS, to test if race or ethnicity moderated the relationship between BMI and each treatment outcome. Data was collected at two time points, six weeks and three months after treatment. This study showed that race or ethnicity did not moderate treatment results for the four outcome variables. Additional within-group effect sizes were calculated for all racial and ethnic categories, showing that Hispanic/Latine and Black participants had larger effect sizes in all the outcome variables. The discussion examines the potential strength of Motivational Interviewing due to its client-centered spirit, which naturally allows for incorporating values and identity-based factors, such as culture, into the session. The results suggest similar BMI outcomes among White and Non-White emerging adults who engage in heavy drinking, potentially due to its client-centered approach. This is a preliminary study, and the results are therefore tentative. [ABSTRACT FROM AUTHOR]

This article explores the challenges faced by Parkinson's disease (PD) patients in low and middle-income countries, particularly in India, where access to continuous levodopa delivery is limited. The current device-aided therapies for continuous drug delivery (CDD) are expensive and not readily available in underserved countries. The article suggests a four-level approach to address this issue, including extending the duration of levodopa's effects, improving its absorption and transportation, considering alternative therapies like Mucuna pruriens, and reducing the cost of delivery systems. The authors also emphasize the importance of diversity in PD research and healthcare to address existing inequalities. [Extracted from the article]

The association of an individual's genetic makeup with their response to drugs is referred to as pharmacogenomics. By understanding the relationship between genetic variants and drug efficacy or toxicity, we are able to optimize pharmacological therapy according to an individual's genotype. Pharmacogenomics research has historically suffered from bias and underrepresentation of people from certain ancestry groups and of the female sex. These biases can arise from factors such as drugs and indications studied, selection of study participants, and methods used to collect and analyze data. To examine the representation of biogeographical populations in pharmacogenomic data sets, we describe individuals involved in gene-drug response studies from PharmGKB, a leading repository of drug-gene annotations, and showcaseCYP2D6, a gene that metabolizes approximately 25% of all prescribed drugs. We also show how the historical underrepresentation of females in clinical trials has led to significantly more adverse drug reactions in females than in males. [ABSTRACT FROM AUTHOR]

Participation of Black American older aduits in community-engaged research remains challenging in health sciences. The objectives of this study were to describe the specific efforts, successes, and challenges in recruiting Black American older adults in research led by the Health and Wellness in Aging Across the Lifespan core, part of the Virginia Commonwealth University Institute for Inclusion, Inquiry, and Innovation (iCubed). We conducted a cross-case analysis of 6 community-engaged research projects using the community-engaged research continuum model. Successful recruitment strategies comprised a multifaceted approach to community-based collaboration, including a wellness program with a long standing relationship with the community, engaging key stakeholders and a community advisory board, and building a community-based coalition of stakeholders. Posting flyers and modest monetary compensation remain standard recruitment strategies. The cross-case analysis offered critical lessons on the community's nature and level of engagement in research. Relationship building based on trust and respect is essential to solving complex aging issues in the community. [ABSTRACT FROM AUTHOR]

Amid the COVID-19 pandemic, research is needed to translate knowledge of vaccine attitudes into strategic interventions aimed at increasing vaccine uptake. The current study gleaned formative data on vaccination attitudes among underserved Black populations, which can then be used to strategically design messages grounded in theories of persuasion. The goal is to promote vaccination among hesitant Black populations. Specifically, researchers facilitated community-engaged focus groups and individual interviews to better understand Black individuals' attitudes about COVID-19 vaccine uptake. In partnership with predominantly Black churches and a local university, investigators recruited community members to share their perspectives on the COVID-19 pandemic and vaccines. This audience insight will be useful as individuals who remain hesitant to receive COVID-19 vaccines may require targeted, sophisticated interventions. [ABSTRACT FROM AUTHOR]

Recruiting racially and ethnically underrepresented participants into genetics research studies has been challenging. While many institutions have taken steps to address the inequity in genetics research, genetic counseling training programs have the chance to inspire students to engage with underrepresented communities through utilizing different research methodologies. These methodologies can help students focus on research projects that increase access to genetics services and improve clinical care. Community‐engaged research (CER) presents a pedagogical approach to enhance service‐learning opportunities for students. Furthermore, it allows students to develop practical research skills for doing research with the community, rather than on the community. CER is a collaborative community‐academic partnership that leads to mutual benefit and outcomes such as inclusion and engagement of the community in research, building trust and relationships, and increasing cultural awareness and exposure. In addition, CER can be used to address research and healthcare inequities by providing opportunities for genetics professionals and trainees to work closely with underrepresented populations. We aim to highlight the opportunities CER provides to students, mentors, and faculty within the context of graduate research in genetic counseling training from the experiences of a student and an educator. In addition, we hope to emphasize the necessity for projects like these to address the gaps in participation of underrepresented patient populations in research and identify areas that are mutually beneficial to improve health outcomes, patient care experiences, access, and service delivery. This reflective essay illustrates the completion of a CER project that was developed in collaboration with community members to address gaps in clinical genetics services in Indigenous healthcare. [ABSTRACT FROM AUTHOR]

While many patients with disabilities or chronic illnesses are served by genetic counselors, little effort has been made to promote the inclusion of individuals with disabilities and chronic illnesses as professionals in the genetic counseling field. Genetic counselors with disabilities and chronic illnesses have reported insufficient support from their colleagues throughout all stages of their professional journeys, but there is a lack of research exploring these challenges. To gain an understanding of the experiences of this community during graduate training, we conducted semi‐structured interviews with 13 recent graduates of genetic counseling programs who identify as having a disability or chronic illness. Questions explored various aspects of the graduate school experience including challenges, strengths, relationships, disclosure, and accommodations. Qualitative thematic analysis of interview transcripts resulted in six themes: (1) decisions around disclosure are complex, (2) interactions with others contribute to feeling misunderstood, (3) the high‐performance culture in graduate programs makes it challenging to meet personal needs, (4) interpersonal relationships provide support, (5) the accommodation process is often disappointing, and (6) lived experiences are valuable to patients. This study reveals opportunities to better support genetic counseling students with disabilities and chronic illnesses through strengthening inclusion efforts, shifting away from ableist ideologies, and promoting more flexible training options. [ABSTRACT FROM AUTHOR]

Human leukocyte antigen (HLA) molecules and their relationships with natural killer (NK) cells, specifically through their interaction with killer-cell immunoglobulin-like receptors (KIRs), exhibit robust associations with the outcomes of diverse diseases. Moreover, genetic variations in HLA and KIR immune system genes offer limitless depths of complexity. In recent years, a surge of high-powered genome-wide association studies (GWASs) utilizing single nucleotide polymorphism (SNP) arrays has occurred, significantly advancing our understanding of disease pathogenesis. Additionally, advances in HLA reference panels have enabled higher resolution and more reliable imputation, allowing for finer-grained evaluation of the association between sequence variations and disease risk. However, it is essential to note that the majority of these GWASs have focused primarily on populations of Caucasian and Asian origins, neglecting underrepresented populations in Latin America and Africa. This omission not only leads to disparities in health care access but also restricts our knowledge of novel genetic variants involved in disease pathogenesis within these overlooked populations. Since the KIR and HLA haplotypes prevalent in each population are clearly modelled by the specific environment, the aim of this review is to encourage studies investigating HLA/KIR involvement in infection and autoimmune diseases, reproduction, and transplantation in underrepresented populations.

There is increasing recognition of the crucial need for robust community engagement in health research and clinical trials. Despite this awareness, challenges persist in bridging the gap between researchers and communities. Much of the current discourse focuses on addressing issues such as cultural humility and equitable partnerships. To expand this conversation, we conducted community engagement studios, following the model by Joosten et al. We wanted to gather perspectives on research involvement across New Mexico. This process and resultant findings offer valuable insights into effective community engagement practices and advance clinical and translational science by amplifying community voices and needs.

Genomic sequencing results need to be effectively communicated across all populations and practice settings. Projects in the Clinical Sequencing Evidence-Generating Research (CSER) consortium enroll diverse racial/ethnic and medically underserved participants across various clinical contexts. This article explores a set of CSER results disclosure cases to expand the evidence base on experiences returning genomic results. Case details were collected using a structured set of questions. We identified common themes in the case set, and assessed challenges and strategies in achieving six relevant results disclosure objectives. CSER-affiliated patient/community stakeholder impressions of the findings were solicited via video conference calls. Seventeen cases across six CSER projects were included. Case themes sorted into four categories: (1) factors influencing participant understanding, (2) participant emotional response, (3) disease burden, and (4) logistical challenges. Challenges meeting results disclosure objectives included a lack of dialogue, health literacy level, unexpected findings, and complex concepts. Strategies were consistent with traditional genetic counseling practice, but also highlighted approaches being evaluated in CSER projects. Patient/community stakeholders supported the identified themes and provided additional suggestions to improve patient understanding and engagement. These experiences add valuable insights into adapting genomic results disclosure practices to best serve all patient populations.