Relationships of Cognitive Measures with Cerebrospinal Fluid but Not Imaging Biomarkers of Alzheimer Disease Vary between Black and White Individuals.

OBJECTIVE: Biomarkers of Alzheimer disease vary between groups of self-identified Black and White individuals in some studies. This study examined whether the relationships between biomarkers or between biomarkers and cognitive measures varied by racialized groups. METHODS: Cerebrospinal fluid (CSF), amyloid positron emission tomography (PET), and magnetic resonance imaging measures were harmonized across four studies of memory and aging. Spearman correlations between biomarkers and between biomarkers and cognitive measures were calculated within each racialized group, then compared between groups by standard normal tests after Fisher's Z-transformations. RESULTS: The harmonized dataset included at least one biomarker measurement from 495 Black and 2,600 White participants. The mean age was similar between racialized groups. However, Black participants were less likely to have cognitive impairment (28% vs 36%) and had less abnormality of some CSF biomarkers including CSF Aß42/40, total tau, p-tau181, and neurofilament light. CSF Aß42/40 was negatively correlated with total tau and p-tau181 in both groups, but at a smaller magnitude in Black individuals. CSF Aß42/40, total tau, and p-tau181 had weaker correlations with cognitive measures, especially episodic memory, in Black than White participants. Correlations of amyloid measures between CSF (Aß42/40, Aß42) and PET imaging were also weaker in Black than White participants. Importantly, no differences based on race were found in correlations between different imaging biomarkers, or in correlations between imaging biomarkers and cognitive measures. INTERPRETATION: Relationships between CSF biomarkers but not imaging biomarkers varied by racialized groups. Imaging biomarkers performed more consistently across racialized groups in associations with cognitive measures. ANN NEUROL 2024;95:495-506.

"In our community, we normalize pain": discussions around menstruation and uterine fibroids with Black women and Latinas.

BACKGROUND: Uterine fibroids are non-cancerous neoplasms that arise from the uterus affecting over 75% of women. However, there is a disparity with Black women having an increased prevalence of nearly 80%. Black women also experience increased symptom burden, including younger age at the time of diagnosis and increased number and volume of fibroids. Less is known about other ethnoracially diverse women such as Latinas and the potential cultural impacts on fibroid burden and treatment. METHODS: Community engagement studios were conducted to facilitate discussions with stakeholders on their uterine fibroid and menstruation experience. We recruited Black women (n = 6) diagnosed with uterine fibroids and Latinas (n = 7) without uterine fibroids. We held two virtual community engagement studios split by uterine fibroid diagnosis. The studios were not audio recorded and notes were taken by four notetakers. The notes were thematically analyzed in Atlas.ti using content analysis. RESULTS: Participants felt there was a lack of discussion around menstruation overall, whether in the home or school settings. This lack of menstruation education was pronounced when participants had their first menstruation experience, with many unaware of what to expect. This silence around menstruation led to a normalization of painful menstruation symptoms. When it came to different treatment options for uterine fibroids, some women wanted to explore alternative treatments but were dismissed by their healthcare providers. Many participants advocated for having discussions with their healthcare provider about life goals to discuss different treatment options for their uterine fibroids. CONCLUSION: Despite uterine fibroid diagnosis, there is silence around menstruation. Menstruation is a normal biological occurrence and needs to be discussed to help prevent delayed diagnosis of uterine fibroids and possibly other gynecological disorders. Along with increased discussions around menstruation, further discussion is needed between healthcare providers and uterine fibroid patients to explore appropriate treatment options.

Racial differences in longitudinal Alzheimer's disease biomarkers among cognitively normal adults.

INTRODUCTION: Longitudinal changes in Alzheimer's disease (AD) biomarkers, including cerebrospinal fluid (CSF) analytes, amyloid uptakes from positron emission tomography (PET), structural outcomes from magnetic resonance imaging (MRI), and cognition, have not been compared between Blacks and Whites. METHODS: A total of 179 Blacks and 1180 Whites who were cognitively normal at baseline and had longitudinal data from at least one biomarker modality were analyzed for the annual rates of change. RESULTS: CSF amyloid beta (Aß)42/Aß40 declined more slowly (P = .0390), and amyloid (PET) accumulated more slowly (P = .0157), in Blacks than Whites. CSF Aß42 changed in opposite directions over time between Blacks and Whites (P = .0039). The annual increase in CSF total tau and phosphorylated tau181 for Blacks was about half of that for Whites. DISCUSSION: Longitudinal racial differences in amyloid biomarkers are observed. It will be important to comprehensively and prospectively examine the effects of apolipoprotein E genotype and sociocultural factors on these differences.

Perspective on the "African American participation in Alzheimer disease research: Effective strategies" workshop, 2018.

The Washington University School of Medicine Knight Alzheimer Disease Research Center's "African American Participation in Alzheimer Disease Research: Effective Strategies" Workshop convened to address a major limitation of the ongoing scientific progress regarding Alzheimer's disease and related dementias (ADRD): participants in most ADRD research programs overwhelmingly have been limited to non-Hispanic white persons, thus precluding knowledge as to how ADRD may be represented in non-white individuals. Factors that may contribute to successful recruitment and retention of African Americans into ADRD research were discussed and organized into actionable next steps as described within this report.

Multimedia Appendix Correction: Technological Innovations in Disease Management: Text Mining US Patent Data From 1995 to 2017.

[This corrects the article DOI: 10.2196/13316.].

Technological Innovations in Disease Management: Text Mining US Patent Data From 1995 to 2017.

BACKGROUND: Patents are important intellectual property protecting technological innovations that inspire efficient research and development in biomedicine. The number of awarded patents serves as an important indicator of economic growth and technological innovation. Researchers have mined patents to characterize the focuses and trends of technological innovations in many fields. OBJECTIVE: To expand patent mining to biomedicine and facilitate future resource allocation in biomedical research for the United States, we analyzed US patent documents to determine the focuses and trends of protected technological innovations across the entire disease landscape. METHODS: We analyzed more than 5 million US patent documents between 1995 and 2017, using summary statistics and dynamic topic modeling. More specifically, we investigated the disease coverage and latent topics in patent documents over time. We also incorporated the patent data into the calculation of our recently developed Research Opportunity Index (ROI) and Public Health Index (PHI), to recalibrate the resource allocation in biomedical research. RESULTS: Our analysis showed that protected technological innovations have been primarily focused on socioeconomically critical diseases such as "other cancers" (malignant neoplasm of head, face, neck, abdomen, pelvis, or limb; disseminated malignant neoplasm; Merkel cell carcinoma; and malignant neoplasm, malignant carcinoid tumors, neuroendocrine tumor, and carcinoma in situ of an unspecified site), diabetes mellitus, and obesity. The United States has significantly improved resource allocation to biomedical research and development over the past 17 years, as illustrated by the decreasing PHI. Diseases with positive ROI, such as ankle and foot fracture, indicate potential research opportunities for the future. Development of novel chemical or biological drugs and electrical devices for diagnosis and disease management is the dominating topic in patented inventions. CONCLUSIONS: This multifaceted analysis of patent documents provides a deep understanding of the focuses and trends of technological innovations in disease management in patents. Our findings offer insights into future research and innovation opportunities and provide actionable information to facilitate policy makers, payers, and investors to make better evidence-based decisions regarding resource allocation in biomedicine.

Racial disparities in bipolar disorder treatment and research: a call to action.

OBJECTIVES: Health disparities between individuals of African and European ancestry are well documented. The disparities in bipolar disorder may be driven by racial bias superimposed on established factors contributing to misdiagnosis, including: evolving empirically based diagnostic criteria (International Classification of Diseases [ICD], Research Diagnostic Criteria [RDC] and Diagnostic and Statistical Manual [DSM]), multiple symptom domains (i.e. mania, depression and psychosis), and multimodal medical and additional psychiatric comorbidity. METHODS: For this paper, we reviewed the phenomenological differences between bipolar individuals of African and European ancestry in the context of diagnostic criteria and clinical factors that may contribute to a potential racial bias. RESULTS: Published data show that bipolar persons of African ancestry, compared with bipolar persons of non-African ancestry, are more often misdiagnosed with a disease other than bipolar disorder (i.e. schizophrenia). Additionally, studies show that there are disparities in recruiting patients of African ancestry to participate in important genomic studies. This gap in biological research in this underrepresented minority may represent a missed opportunity to address potential racial differences in the risk and course of bipolar illness. CONCLUSION: A concerted effort by the research community to increase inclusion of diverse persons in studies of bipolar disorder through community engagement may facilitate fully addressing these diagnostic and treatment disparities in bipolar individuals of African ancestry.

The Effect of Message Framing on African American Women's Intention to Participate in Health-Related Research.

This study examined the effect of message framing on African American women's intention to participate in health-related research and actual registration in ResearchMatch (RM), a disease-neutral, national volunteer research registry. A community-engaged approach was used involving collaboration between an academic medical center and a volunteer service organization formed by professional women of color. A self-administered survey that contained an embedded message framing manipulation was distributed to more than 2,000 African American women attending the 2012 national assembly of The Links, Incorporated. A total of 391 surveys were completed (381 after exclusion: 187 containing the gain-framed message and 194 containing the loss-framed message). The majority (57%) of women expressed favorable intentions to participate in health-related research, and 21% subsequently enrolled in RM. The effect of message framing on intention was moderated by self-efficacy. There was no effect of message framing on RM registration; however, those with high self-efficacy were more than 2 times as likely as those with low self-efficacy to register as a potential study volunteer in RM (odds ratio = 2.62, 95% confidence interval [1.29, 5.33]). This investigation makes theoretical and practical contributions to the field of health communication and informs future strategies to meaningfully and effectively include women and minorities in health-related research.

Social Determinants of Genetics Referral and Completion Rates Among Child Neurology Patients.

Objective: To investigate clinical, social, and systems-level determinants predictive of genetics clinic referral and completion of genetics clinic visits among child neurology patients. Methods: Electronic health record data were extracted from patients 0-18 years old who were evaluated in child neurology clinics at a single tertiary care institution between July 2018 to January 2020. Variables aligned with the Health Equity Implementation Framework. Referral and referral completion rates to genetics and cardiology clinics were compared among Black vs White patients using bivariate analysis. Demographic variables associated with genetics clinic referral and visit completion were identified using logistic regressions. Results: In a cohort of 11,371 child neurology patients, 304 genetics clinic referrals and 82 cardiology clinic referrals were placed. In multivariate analysis of patients with Black or White ethnoracial identity (n=10,601), genetics clinic referral rates did not differ by race, but were significantly associated with younger age, rural address, neurodevelopmental disorder diagnosis, number of neurology clinic visits, and provider type. The only predictors of genetics clinic visit completion number of neurology clinic visits and race/ethnicity, with White patients being twice as likely as Black patients to complete the visit. Cardiology clinic referrals and visit completion did not differ by race/ethnicity. Interpretation: Although race/ethnicity was not associated with differences in genetics clinic referral rates, White patients were twice as likely as Black patients to complete a genetics clinic visit after referral. Further work is needed to determine whether this is due to systemic/structural racism, differences in attitudes toward genetic testing, or other factors.

Comparison of Demographic and Clinical Features of Bipolar Disorder in Persons of African and European Ancestry.

AIM: This study quantified and compared demographic and clinical features of bipolar disorder (BD) in persons of African ancestry (AA) and European ancestry (EUR). METHODS: Participants enrolled in the Mayo Clinic Bipolar Biobank from 2009 to 2015. The structured clinical interview for DSM-IV was used to confirm the diagnosis of BD, and a questionnaire was developed to collect data on the clinical course of illness. Descriptive statistics and bivariate analyses were completed to compare AA versus EUR participants. Subsequently, clinical outcomes were compared between AA and EUR participants using linear regression for continuous outcomes or logistic regression for binary outcomes while controlling for differences in age, sex, and recruitment site. RESULTS: Of 1865 participants enrolled in the bipolar biobank, 65 (3.5%) self-identified as AA. The clinical phenotype for AA participants, in comparison to EUR participants, was more likely to include a history of PTSD (39.7% vs. 26.2%), cocaine use disorder (24.2% vs. 11.9%), and tardive dyskinesia (7.1% vs. 3%). CONCLUSION: The low rate of AA enrollment is consistent with other genetic studies. While clinical features of bipolar disorder are largely similar, this study identified differences in rates of trauma, substance use, and tardive dyskinesia that may represent health disparities in bipolar patients of African ancestry. Future bipolar biomarker studies with larger sample sizes focused on underrepresented populations will provide greater ancestry diversity in genomic medicine with greater applicability to diverse patient populations, serving to inform health care policies to address disparities in bipolar disorder.

Use of Live Community Events on Facebook to Share Health and Clinical Research Information With a Minnesota Statewide Community: Exploratory Study.

BACKGROUND: Community engagement can make a substantial difference in health outcomes and strengthen the capacity to deal with disruptive public health events such as the COVID-19 pandemic. Social media platforms such as Facebook are a promising avenue to reach the broader public and enhance access to clinical and translational science, and require further evaluation from the scientific community. OBJECTIVE: This study aims to describe the use of live community events to enhance communication about clinical and health research through a Facebook platform case study (Minnesota [MN] Research Link) with a Minnesota statewide community. We examined variables associated with video engagement including video length and type of posting. METHODS: From June 2019 to February 2021, MN Research Link streamed 38 live community events on its public Facebook page, MN Research Link. Live community events highlighted different investigators' clinical and health research in the areas of mental health, health and wellness, chronic diseases, and immunology/infectious diseases. Facebook analytics were used to determine the number of views, total minutes viewed, engagement metrics, and audience retention. An engagement rate was calculated by the total number of interactions (likes, shares, and comments) divided by the total length of the live event by the type of live community event. RESULTS: The 38 live community events averaged 23 minutes and 1 second in duration. The total time viewed for all 38 videos was 10 hours, 44 minutes, and 40 seconds. Viewers' watch time averaged 23 seconds of content per video. After adjusting for video length, promotional videos and research presentations had the highest engagement and retention rates. Events that included audience participation did not have higher retention rates compared to events without audience participation. CONCLUSIONS: The use of live community events showed adequate levels of engagement from participants. A view time of 23 seconds on average per video suggests that short informational videos engage viewers of clinical and translational science content. Live community events on Facebook can be an effective method of advancing health promotion and clinical and translational science content; however, certain types of events have more impact on engagement than others.

Perceptions of Ethnoracial Factors in the Management and Treatment of Uterine Fibroids.

BACKGROUND: Uterine fibroids are non-cancerous neoplasms of the uterus. Women of color, including non-Hispanic Black/African American women and Hispanic/Latinas, have a higher uterine fibroid prevalence, incidence, and disease burden compared to non-Hispanic White women. Therefore, understanding ethnoracial factors in the diagnosis and treatment of uterine fibroids in women of color is critical. This study provides insight on the ethnoracial factors and cultural barriers experienced by women of color in the management and treatment of uterine fibroids. METHODS: Women were recruited via The Fibroid Foundation, a nonprofit that provides uterine fibroid support and education. Women who were interested completed an online screening survey. Eligible participants were interviewed via phone. Transcribed audio recordings were qualitatively analyzed using the principles of grounded theory. RESULTS: Forty-seven women of reproductive age who were diagnosed with uterine fibroids and received U.S.-based care participated in a semi-structured interview exploring experiences with uterine fibroid diagnosis and management. Twenty-eight women self-identified as Black, Latina, or other ethnicity. Women of color reported fibroid symptoms that significantly disrupted their work and home life. Women of color also reported perceptions that their race/ethnicity impacted their uterine fibroid treatment, including negative interpersonal provider-patient interactions. These perceptions engendered feelings of skepticism towards the medical system based on historical injustices and/or their own negative experiences and led some to go without longitudinal care. CONCLUSION: Cultural and familial factors have significant impact on uterine fibroid diagnosis and management. Greater attention to culturally sensitive care and potential bias reduction in the treatment of uterine fibroids should be a priority.

Changing the face of academic medicine: an equity action plan for institutions.

In recent years, there have been concerted efforts to better recruit, support, and retain diverse faculty, staff, and trainees in academic medicine. However, many institutions lack comprehensive and strategic plans to provide support to retain and recruit individuals from historically underrepresented groups. In this article, we itemize specific mechanisms through which institutions can support diverse individuals with the goal of improving inclusion and belonging in the workforce to better reflect the diversity of the intended patient and research participant population.

Bridging the Technological Divide: Stigmas and Challenges With Technology in Digital Brain Health Studies of Older Adults.

The COVID-19 pandemic has increased adoption of remote assessments in clinical research. However, longstanding stereotypes persist regarding older adults' technology familiarity and their willingness to participate in technology-enabled remote studies. We examined the validity of these stereotypes using a novel technology familiarity assessment (n = 342) and with a critical evaluation of participation factors from an intensive smartphone study of cognition in older adults (n = 445). The technology assessment revealed that older age was strongly associated with less technology familiarity, less frequent engagement with technology, and higher difficulty ratings. Despite this, the majority (86.5%) of older adults elected to participate in the smartphone study and showed exceptional adherence (85.7%). Furthermore, among those enrolled, neither technology familiarity, knowledge, perceived difficulty, nor gender, race, or education were associated with adherence. These results suggest that while older adults remain significantly less familiar with technology than younger generations, with thoughtful study planning that emphasizes participant support and user-centered design, they are willing and capable participants in technology-enabled studies. And once enrolled, they are remarkably adherent.

Establishing a Framework for Gathering Structural and Social Determinants of Health in Alzheimer's Disease Research Centers.

Structural and social determinants of health (SSDoH) are environmental conditions in which individuals are born, live, learn, work, play, worship, and age that affect health, functioning, and quality-of-life outcomes across the life course. Growing evidence suggests that SSDoH can help to explain heterogeneity in outcomes in Alzheimer's disease and Alzheimer's disease and related dementias (AD/ADRD) research and clinical practice. The National Institute on Aging has prioritized collecting SSDoH data to elucidate disease mechanisms and aid discovery of disease-modifying treatments. However, a major nexus of AD/ADRD research, the national network of Alzheimer's Disease Research Centers (ADRCs), collects few SSDoH data. We describe a framework for feasibly gathering and modeling SSDoH data across ADRCs. We lay out key constructs, their measures, and empirical evidence for their importance in elucidating disease and prevention mechanisms. Toward a goal of translation, the framework proposes a modular structure with a core set of measures and options for adjunctive modules. We describe considerations for measuring SSDoH in existing geographically and culturally diverse research cohorts. We also outline a rationale for universal implementation of a set of SSDoH measures and juxtapose the approach with alternatives aimed at collecting SSDoH data.

High prevalence of chronic viral hepatitis B and C in Minnesota Somalis contributes to rising hepatocellular carcinoma incidence.

BACKGROUND: Chronic hepatitis B virus (HBV) and hepatitis C virus (HCV) infections are known risk factors for liver disease, cirrhosis and hepatocellular carcinoma (HCC). There is substantial global variation in HBV and HCV prevalence resulting in variations in cirrhosis and HCC. We previously reported high prevalence of HBV and HCV infections in Somali immigrants seen at an academic medical center in Minnesota. AIM: To determine the prevalence of chronic viral hepatitis in Somali immigrants in Minnesota through a community-based screening program. METHODS: We conducted a prospective community-based participatory research study in the Somali community in Minnesota in partnership with community advisory boards, community clinics and local mosques between November 2010 and December 2015 (data was analyzed in 2020). Serum was tested for hepatitis B surface antigen, hepatitis B core antibody, hepatitis B surface antibody and anti-HCV antibody. RESULTS: Of 779 participants, 15.4% tested positive for chronic HBV infection, 50.2% for prior exposure to HBV and 7.6% for chronic HCV infection. Calculated age-adjusted frequencies in males and females for chronic HBV were 12.5% and 11.6%; for prior exposure to HBV were 44.8% and 41.3%; and for chronic HCV were 6.7% and 5.7%, respectively. Seven participants developed incident HCC during follow up. CONCLUSION: Chronic HBV and HCV are major risk factors for liver disease and HCC among Somali immigrants, with prevalence of both infections substantially higher than in the general United States population. Community-based screening is essential for identifying and providing health education and linkage to care for diagnosed patients.

Seat belt use among overweight and obese adolescents.

Motor vehicle crashes are the leading cause of death for adolescents. Previous studies with adults found an association between weight status and decreased use of seat belts. Research has also found significantly higher morbidity and mortality rates in obese individuals who are involved in motor vehicle crashes. If these relationships hold true in obese adolescents they represent additional risk factors for complications from motor vehicle trauma. Given the prevalence of obesity in adolescents (17.4%) and the increased risk of harm associated with obese individuals involved in motor vehicle crashes, this study explored whether there was an association between obesity in adolescents and their use of seat belts. Initial investigation found that rarely/never wearing seat belts was significantly greater for African Americans (22.6%), 18 years of age or older (19.4%), lived with adults other than both parents (15.7%), and males (15.4%). Bivariate logistic regression analysis controlling for demographic variables found that there was no statistically significant difference between overweight and normal weight adolescents. However, obese students were 1.72 times as likely as normal weight students to never or rarely wear their seat belts when riding in a car as a passenger. In particular, obese females and obese students in the middle school age ranges were statistically significantly more likely than normal weight students to never or rarely wear their seat belts.