bluuebunny/crossref_metadata_2025_split huggingface dataset:
The effects of culturally adapted recruitment strategies for Black/ African Americans' engagement with Alzheimer’s Disease Research in New York City
Authors: Browne Laurel Y , Bubu Omonigho Michael , Dominguez Joanna , Sogade Anamarie , Weisgerber Elizabeth , Dharmapuri Anhiti , McBride Julian , Cesar Oliver , Gills Joshua L , Barry Fatoumata 
Published: January 2025

AbstractBackgroundIn the United States, Black people represent 12% of the total US population and account for 19.3% of dementia cases. Social determinants of health (SDOH) and vascular comorbidities contribute to Black/African Americans having a higher risk of Alzheimer’s disease and related dementias (ADRD). More importantly, Black community underrepresentation in clinical research studies continues to be an issue. We aimed to employ culturally adapted recruitment methods to increase engagement of older Black/African Americans ages 55‐85 in ADRD research studies.MethodTo mitigate the underrepresentation of Black/African Americans in ADRD studies, the Aging Research in Sleep Equity & Dementia Prevention Program (ARISE‐DP) at NYU Langone Health utilized multiple streams of recruitment with a focus on cultural inclusivity and humility. Recruitment methods included community outreach events, stakeholders, referrals, and recruitment companies (BuildClinical). In addition, a community liaison was utilized to form relationships, build trust, and increase engagement between the Black community in NYC & the ARISE‐DP Program. We compared previous recruitment methods, such as cold calls and mychart, to forming bonds and increasing literacy. The specific study’s recruitment goal for Black/African Americans was 125.ResultRecruitment efforts occurred from September 2023 to January 2024. As a result of the culturally adapted recruitment strategies, engagement with ARISE‐DP increased by 100%. Each strategy advanced the total number of people reached (N = 616): community outreach events (N = 297), stakeholders (N = 59), referrals (N = 34), and BuildClinical (N = 226). Individuals who expressed interest in participating in ARISE‐DP clinical trials were screened and, based on meeting eligibility criteria (age, cognition, and comfortability), were invited to be enrolled (N = 74) with a ratio of 44 Black women and 30 Black men recruited. BuildClinical (N = 22), community outreach events (N = 20), and stakeholders (N = 19) were the most effective recruitment strategies, followed by referrals (N = 12). As a result, we have met 59% of our recruitment goal in 3 months.ConclusionRepresentation, education, culturally responsive methods, and including the community in recruitment increase trust and engagement in research studies. Recruitment strategies that acknowledge the historical barriers to Black/African American involvement in clinical studies and provide a holistic approach lead to an equitable, racially inclusive research environment.
Engaging and Recruiting Latino‐led Community Organizations to Build Workforce Capacity in AD/Brain Health Prevention Research
Authors: Diaz‐Santos Mirella 
Published: January 2025

AbstractBackgroundAD prevention and early detection are crucial to reduce prevalence projections in Latinos. Despite these projections, our community partners in Los Angeles County continue to disclose barriers in accessing culturally and linguistically congruent bilingual programs activating behavioral modifications for AD prevention and early identification of cognitive changes. In this study, we partnered with community organizations to co‐design and pilot a brain health prevention program tailored to the needs of their constituents.MethodWe used a mixed‐methods design using quantitative data from surveys, and qualitative data from informal short interviews in Spanish and English with Latino community organizations and their constituents. We implemented Community‐Based Participatory Research (CBPR) and Human Centered Design (HCD) principles, anchoring the program in the cognitive reserve theory, tailored to cultural values, traditions, and needs of Latinos in Los Angeles County. Spanish and English‐speaking Latino members requested brain health and early detections materials easy to comprehend. Four Spanish and English brochures were designed. We also design a communication training toolkit to improve delivery of the program from our research team, employing oral storytelling techniques with cultural metaphors explaining brain structure/functions and cognitive functioning/decline.ResultsBetween June and December 2023, our team received invitations to participate in 11 community engagement and outreach events across Los Angeles County. A team of 3 bilingual trained research assistants engaged with approximately 475 Spanish and English‐speaking community members with an average of 43 individuals per event. Average distance traveled averaged 37 miles roundtrip total per event. Total printing cost per event was approximately $292, with an additional $30 for giveaways. In the 6 months of implementation, a total of thirty community‐based organizations requested formal presentations and trainings for their staff. Overarching qualitative themes included the community‐centeredness of the program, it’s cultural, linguistically and health literacy appropriateness, and the culturally competent communication skills showcased by bilingual research staff.ConclusionFollowing CBPR, and HCD principles, we showed respect for community needs, while empowering the members to be an integral part of the design and pilot. Our approach engaged and recruited 30 Latino‐led community organizations interested in building their own workforce capacity in brain health prevention and early detection.
Pragmatic Implementation of a Comprehensive Dementia Care Management Program in a Large Health System: The Cedars‐Sinai C.A.R.E.S. Program Preliminary Data
Authors: Tan Zaldy S , Qureshi Nabeel , Spivack Erica , Rhinehart Deana , Gatmaitan Dyane , Guinto Augustine , Kremen Sarah , Sicotte Nancy 
Published: January 2025

AbstractBackgroundThe United States faces a growing challenge with over 6.5 million people living with dementia (PLwD). PLwD and their caregivers struggle with cognitive, functional, behavioral, and psychosocial issues. As dementia care shifts to home settings, caregivers receive inadequate support but bear increasing responsibilities, leading to higher healthcare costs. In response, the Centers for Medicare & Medicaid Services (CMS) introduced the Guiding an Improving Dementia Experience (GUIDE) Model. The study explores the real‐world implementation of the Cedars‐Sinai C.A.R.E.S. Program, a pragmatic dementia care model, detailing its recruitment process and initial outcomes.MethodsThe Cedars‐Sinai C.A.R.E.S. Program was integrated into the Epic electronic health record system, and focused on proactive patient identification, engagement, interdisciplinary collaboration, care transitions, and ongoing care management. Eligible patients aged 65 and older with a dementia diagnosis were identified through electronic health record and invited to join the program. Nurse practitioners with specialized training in dementia care performed comprehensive assessments using the novel CEDARS‐6 tool, leading to personalized care plans developed in consultation with primary care providers. Patients benefit from a multidisciplinary team and support from care navigators.ResultsOf the 781 eligible patients identified, 431 were enrolled in the C.A.R.E.S. Program. Enrollees were racially diverse, with lower caregiver strain and patient behavioral and psychological symptoms of dementia (BPSD) severity compared to other programs. Healthcare utilization, including hospitalizations, emergency department (ED) admissions, and urgent care visits showed a downward trend over time. Completion of advanced directives and Physician Order of Life Sustaining Treatment (POLST) increased after enrollment.ConclusionThe Cedars‐Sinai C.A.R.E.S. Program offers a promising approach to dementia care. Its real‐world implementation demonstrates the feasibility of enrolling a diverse population and achieving positive outcomes for PLwD and their caregivers, supporting the goals of national dementia care initiatives.
Common Mechanisms of Long COVID and Vascular Dementia
Authors: Talkington Grant , Ismael Saifudeen , Hall Gregory W , Bix Gregory J 
Published: January 2025

AbstractBackgroundVascular dementia (VaD), the second most common cause of dementia, is characterized by cognitive decline due to reduced cerebral blood flow and blood‐brain barrier disruption. Current evidence demonstrates that not only are VaD patients at higher risk of severe COVID‐19 illness and mortality, but also that pre‐existing cognitive dysfunction/dementia is associated with increased COVID‐19 incidence. Conversely, SARS‐CoV‐2 infection alone worsens dementia‐related mild cognitive impairment (MCI) and increases risk of cognitive decline, supported by similar fMRI findings demonstrating hypoperfusion. Therefore, we hypothesize that both vascular dementia and long COVID bear a common vascular mechanism.MethodTo investigate, we conducted a chronic‐phase COVID‐19 study utilizing an innovative non‐transgenic mouse model with Mouse Adapted 10 (MA‐10) strain of SARS‐CoV‐2 following bilateral carotid artery stenosis (BCAS) to model VaD. We inoculated 12‐week‐old C57 mice intranasally with 1×10^4 PFU of MA‐10 and followed them to 15 days post‐infection.ResultBulk RNA sequencing on brain tissues and analysis with Ingenuity Pathway Analysis (IPA) revealed substantial net alterations to several signaling pathways including IL‐6, IL‐1B, and Pathogen‐associated molecular response patterns, providing critical insights into the mechanisms underpinning acute and chronic COVID‐19 morbidities.ConclusionOur findings confirm a significant mechanistic interaction between VaD and long COVID, suggesting that existing therapies targeting VaD may also be effective in long COVID.
VXX‐301, a muti‐epitope active immunotherapy targeting Tau, induces antibodies with favorable binding to Tau and exhibits efficacy in vivo
Authors: Boyd Justin , Dodart JC , Prokop Stefan 
Published: January 2025

AbstractBackgroundVaxxinity is developing an active immunotherapy targeting Tau for Alzheimer’s disease (AD) and other tauopathies. VXX‐301 is a multi‐epitope vaccine designed to target the N‐terminal and repeat domains of Tau. This design enables targeting multiple forms of Tau thought to contribute to Tau associated pathologies. Such a vaccine would be well positioned for the treatment and prevention of neuropathology induced by Tau.MethodVXX‐301 comprises a mixture of two Tau targeting peptides (p5555kb and p5187kb) each conjugated to Vaxxinity’s proprietary T helper carrier peptide and formulated with CpG and AdjuPhos. Antibody titers against specific targeted Tau regions in immunized rats were quantified and compared to single epitope targeting vaccines, p5555kb and p5187kb. Additionally, antibody titers against full length 2N4R rTau monomers and preformed fibrils were quantified. IgG isotyping was also conducted. The binding properties of VXX‐301‐derived antibodies were characterized by Western blot and immunohistochemistry. Epitope mapping was also conducted to confirm binding to targeted regions. In vitro activity was performed to quantify VXX‐301 antibodies in Tau aggregation and Tau uptake assays. In vivo efficacy was measured by evaluating the onset of ataxia and survival of P301L mice.ResultVXX‐301 induces high antibody titers against specific regions of Tau. Antibodies are primarily of the IgG1 isotype in rats and exhibit high binding potency to full length monomeric and PFF Tau. Additionally, antibodies bind to multiple recombinant Tau preparations, including 2N4R, 2N3R, 2N4R P301S, and K18 (P301L). Epitope mapping analyses confirm that VXX‐301‐derived antibodies bind to the intended epitopes of Tau. In vitro, VXX‐301‐derived antibodies block Tau cellular uptake as well as Tau aggregation. Finally, P301L transgenic mice immunized with VXX‐301 exhibit protection from ataxia onset and death.ConclusionHere we present preclinical data indicating that VXX‐301 is immunogenic and induces antibodies with favorable characteristics. VXX‐301 antibodies exhibit binding to specific targeted regions as well as multiple forms of full‐length Tau. Moreover, we show that VXX‐301 antibodies bind to Tau in human brain tissue samples. VXX‐301 demonstrates both in vitro and in vivo efficacy against Tau‐dependent phenotypes, supporting the further development of this vaccine as a treatment and prevention of AD and other tauopathies.
The Scale of Benefit and Cost Effectiveness of the Care Ecosystem for Alzheimer’s Disease relative to Lecanemab
Authors: Atkins Kelly J , Kahn James G , Possin Katherine L 
Published: January 2025

AbstractBackgroundOnly a small proportion of people living with Alzheimer’s Disease (AD) are eligible for disease modifying therapies such as Lecanemab. Dementia care management programs, such as Care Ecosystem, provide care navigation and specialist resources to people with dementia and their caregivers, with broad eligibility criteria. We first estimated the lifetime health and economic outcomes of adults with MCI or mild dementia due to AD who receive Care Ecosystem, compared to Lecanemab. We then estimated the benefits of each intervention when scaled to the eligible US population.MethodWe employed a decision analytic model to a simulation sample of 1,000 people (52% female) aged 71 years at the commencement of one of three intervention states: 1) usual care, 2) Lecanemab or 3) Care Ecosystem. Next, we applied our model outcomes to all people with MCI or dementia due to AD who were eligible for each intervention. Primary outcomes were quality‐adjusted life years (QALYs); remaining life years (LYs); and costs in 2024 US dollars.ResultPer‐person LYs increased by 0.39 per person with Lecanemab compared to Care Ecosystem and usual care. Lifetime QALYs for Lecanemab were 0.45 higher than usual care, due to disease slowing. Lifetime QALYs for the Care Ecosystem were 0.23 higher than usual care, due to improved quality of life (Figure 1). The per‐person cost of Lecanemab was $105,581 higher than usual care, driven primarily by drug costs. The per‐person cost of the Care Ecosystem was $11,304 lower than usual care, reflecting savings to Medicare associated with dementia care management. In the US in 2024, we estimated ∼765,000 people were eligible for Lecanemab and 6.1 million for Care Ecosystem. The population benefit of Lecanemab was 760,000 QALYs and cost $80 billion compared to usual care. The population benefit of Care Ecosystem was 6,160,000 QALYs with savings of $69 billion (Figure 2).ConclusionLecanemab offers a larger QALY gain per‐person than provided by Care Ecosystem. When scaled to eligible populations, the QALY gains of Care Ecosystem far exceed Lecanemab, with a net cost reduction. Universal access to dementia care management should be a priority of health care policy.
Identifying Dementia Care Partner Supports as a Public Health Priority: Addressing Equity and Unmet Population Health Needs
Authors: Reed Jenn Hollandsworth , Gelmon Sherril B , Dawson Walter D 
Published: January 2025

AbstractBackgroundThe wellbeing of over 11 million care partners of people living with Alzheimer’s disease and related dementias (ADRD) in the United States is increasingly recognized as a public health priority. Addressing care partners’ needs for support and services is particularly important, as care partner burden is associated with negative health outcomes in care partners and people living with ADRD. Care partners from marginalized populations experience inequities in research participation, care burden, and access to supports and services. The goals of this study were 1) to determine supports needed by care partners of people living with ADRD, by empowering population groups historically and currently underserved in ADRD research and services; and 2) to recommend public health policies and interventions to improve care partner wellbeing through social supports and services.MethodsCaregiving‐related priorities of care partners from four populations underserved in ADRD research and services (Asian, Black, Indigenous, and Latinx Americans) were determined using 5 focus groups and 24 in‐depth interviews with care partners and organizations that support people living with dementia in Oregon. Key governmental and nonprofit organizational leaders (N = 40) participated in a modified Delphi process to identify priorities for supporting care partners through policies and programs. Data were collected from October 2022 through August 2023.ResultsCare partners were generally satisfied with clinical ADRD care but identified opportunities for new supports and improved equity in access to services. Eight themes relating to care partner needs were identified: supports, programs and services, information resources, care coordination, technology, financing, workforce development, and policy. Specific needs varied across populations due to cultural traditions, systemic inequities, and structural racism.ConclusionsSupporting care partners is a public health strategy that can improve personal wellbeing of care partners and reduce or delay institutional living for people living with ADRD. To ensure equitable supports across diverse populations, policymakers at all levels of government must engage with care partners from marginalized communities to enhance and expand access to services, especially culturally appropriate services. Policies and programs should also be leveraged to address the social determinants of health for care partners in an equitable way.
Association of Complementary and Integrative Health Use with Risk of Long‐Term Institutionalization, Hospitalization, or Death in Patients with ADRD
Authors: Shao Yijun , Cheng Yan , Ahmed Ali , Zamrini Edward , Zeng Qing 
Published: January 2025

AbstractBackgroundComplementary and Integrative Health (CIH) encompass many therapeutic modalities including physical, nutritional, psychological, and combination therapies. Small clinical trials on Tai‐Chi, yoga, and acupuncture reported improved cognitive functions. However, there is a knowledge gap regarding effectiveness on long‐term outcomes in patients with Alzheimer’s disease and related dementias (ADRD).MethodWe began by randomly selecting 50,000 patients with ADRD from the Veterans Affairs (VA) electronic health record (EHR) database. We used an NLP tool developed by our team to identify the use of CIH modalities (acupuncture, biofeedback, guided imagery, meditation, Tai‐Chi, yoga) after first ADRD diagnosis. For CIH users, the index date was the date of first CIH use after first ADRD diagnosis. For non‐users, the index date was the encounter date matching the index date of an CIH user with the same ADRD diagnosis year. Then we collected their demographics and clinical data including comorbidities and healthcare utilization from the 5 years before index date.Next, we matched the non‐users to the CIH users on the propensity scores calculated using the demographics, comorbidities and healthcare utilizations data. On this matched cohort, we performed survival analysis for the combined endpoint of long‐term institutionalization (LTI), hospitalization, or death.ResultOverall, 4064 (8.1% of 50,000) patients were CIH users. Compared to non‐users, CIH users were younger (78.4 vs. 83.3) with higher proportions of females (3.6% vs. 2.1%) and African Americans (14.8% vs. 10.9%), had higher prevalence in almost all comorbidities, had nearly twice as many visits and hospitalizations per year, and had 4 times longer cumulative hospitalizations during the 5 years before index date (Table 1).On the propensity score‐matched cohort, the survival analysis yielded a hazard ratio of 0.61 (95% CI: 0.57–0.64) for CIH use (Figure 1). There were some differences between acupuncture users and Tai‐Chi/yoga users (Figure 2).ConclusionOur results suggest that CIH treatments in the VA ADRD population are often reserved for patients with more comorbidities and higher healthcare utilizations. In the propensity matched cohort, CIH use is associated with a lower risk in the combined outcome of LTI, hospitalization, or death as the endpoint.
The perspective of soft‐robotics for people with neurodegenerative diseases: Can we develop robotic solutions using soft material?
Authors: Biswas Bijetri , Coulthard Elizabeth , Roudaut Anne 
Published: January 2025

AbstractBackgroundWe investigate perceptions of soft robotics in individuals with neurodegenerative diseases (NDD) from diverse communities. Soft robotics is made from soft, flexible materials to make it safer for users. It is a fast‐emerging medical field with applications ranging from diagnosis to rehabilitation practices. However, this area is underinvestigated in the older population with neurological disorders.MethodWe recruited individuals with NDD, e.g. dementia, Parkinson’s and mild cognitive impairment, via Bristol Brain Centre, charities, personal contacts, and social media advertisements. We aim to understand better user requirements and their views on such innovative technologies. In this ongoing study, we interviewed individuals with NDD, careers and clinicians to find the gap in designing soft robotics and conducted co‐design sessions with each group. To conclude the study, we will collect all the designs, create a prototype and gather iterative feedback.ResultPreliminary results from the semi‐structured interviews have shown that interaction with soft robotics technologies, such as smart pillows, prosthetics, and others, needs further exploration but is challenging. Therefore, individuals found it difficult to think or acknowledge what could help them improve their quality of life. It also highlights the importance of technologies that can help carers facilitate patients' needs. Interviews with clinicians also emphasised carers' needs and technology that can promote independence and improve well‐being. Another interesting finding from the study is that previously, individuals were unaware of creating technologies personalised to them. Furthermore, co‐designing with this population showed that involving them in the ideation and designing process is critical for empowerment.ConclusionDo‐it‐yourself (DIY) practice offers a higher engagement in developing complex technologies, and the user‐centric design process using the Arduino prototyping platform improves the engagement rate. Cultural and ethnic diversity in the study population was another challenge, as it was challenging to get a clear view of their needs due to the language barrier. However, they overcame this by expressing their ideas by drawing. We aim to understand user requirements better and their views on such innovative technologies, present developments in soft robotics technology, and research challenges associated with our population to highlight research directions to understand this emerging field better.