Browsing by Author "Van Heiden, Sarah"

Now showing 1 - 4 of 4
  • Thumbnail Image
    Item
    Accelerating diversity in Alzheimer's disease research by partnering with a community advisory board
    (Wiley, 2023-05-28) Pena-Garcia, Alex; Richards, Ralph; Richards, Mollie; Campbell, Christopher; Mosley, Hank; Asper, Joseph; Eliacin, Johanne; Polsinelli, Angelina; Apostolova, Liana; Hendrie, Hugh; Tackett, Andrew; Elliott, Caprice; Van Heiden, Sarah; Gao, Sujuan; Saykin, Andrew; Wang, Sophia; Medicine, School of Medicine
    Introduction: Community advisory boards (CABs) and researcher partnerships present a promising opportunity to accelerate enrollment of underrepresented groups (URGs). We outline the framework for how the CAB and researchers at the Indiana Alzheimer's Disease Research Center (IADRC) partnered to accelerate URG participation in AD neuroimaging research. Methods: CAB and the IADRC researchers partnered to increase the CAB's impact on URG study enrollment through community and research interactions. Community interactions included the CAB collaboratively building a network of URG focused community organizations and collaborating with those URG-focused organizations to host IADRC outreach and recruitment events. Research interactions included direct impact (CAB members referring themselves or close contacts as participants) and strategic impact, mainly by the CAB working with researchers to develop and refine URG focused outreach and recruitment strategies for IADRC and affiliated studies to increase URG representation. We created a database infrastructure to measure how these interactions impacted URG study enrollment. Results: Out of the 354 URG research referrals made to the IADRC between October 2019 and December 2022, 267 referrals were directly referred by the CAB (N = 36) or from community events in which CAB members organized and/or volunteered at (N = 231). Out of these 267 referrals, 34 were enrolled in IADRC and 2 were enrolled in Indiana University Longitudinal Early Onset AD Study (IU LEADS). Of note, both studies require the prospective participants to be willing to do MRI and PET scans. As of December 2022, 30 out of the 34 enrolled participants have received a consensus diagnosis; the majority were cognitively normal (64.7%), with the remainder having mild cognitive impairment (17.6%) or early-stage AD (2.9%). Discussion: The IADRC CAB-researcher partnership had a measurable impact on the enrollment of African American/Black adults in AD neuroimaging studies. Future studies will need to test whether this conceptual model works for other sites and for other URGs.
  • Thumbnail Image
    Item
    Barriers and facilitators to participating in Alzheimer’s disease biomarker research in Black and White older adults
    (Wiley, 2023-06-05) Eliacin, Johanne; Polsinelli, Angelina J.; Epperson, Francine; Gao, Sujuan; Van Heiden, Sarah; Westmoreland, Glenda; Richards, Ralph; Richards, Mollie; Campbell, Christopher; Hendrie, Hugh; Risacher, Shannon L.; Saykin, Andrew J.; Wang, Sophia; Medicine, School of Medicine
    Introduction: The study examined Black and White prospective participants' views of barriers to and facilitators of participation in Alzheimer's disease (AD) biomarker research. Methods: In a mixed-methods study, 399 community-dwelling Black and White older adults (age ≥55) who had never participated in AD research completed a survey about their perceptions of AD biomarker research. Individuals from lower socioeconomic and education backgrounds and Black men were over-sampled to address perspectives of traditionally under-represented groups. A subset of participants (n = 29) completed qualitative interviews. Results: Most participants expressed interest in biomarker research (overall 69%). However, Black participants were comparatively more hesitant than White participants (28.9% vs 15.1%), were more concerned about study risks (28.9% vs 15.1%), and perceived multiple barriers to participating in brain scans. These results persisted even after adjusting for trust and perceived knowledge of AD. Information was a primary barrier (when absent) and incentive (when provided) for AD biomarker research participation. Black older adults desired more information about AD (eg, risk, prevention), general research processes, and specific biomarker procedures. They also desired return of results to make informed decisions about their health, research-sponsored community awareness events, and for researchers to mitigate the burden placed on participants in research (eg, transportation, basic needs). Conclusion: Our findings increase representativeness in the literature by focusing on individuals with no history of AD research experience and those from traditionally underrepresented groups in research. Results suggest that the research community needs to improve information sharing and raising awareness, increase their presence in the communities of underrepresented groups, reduce incidental costs, and provide valuable personal health information to participants to increase interest. Specific recommendations for improving recruitment are addressed. Future studies will assess the implementation of evidence-based, socioculturally sensitive recruitment strategies to increase enrollment of Black older adults into AD biomarker studies. HIGHLIGHTS: Individuals from under-represented groups are interested in Alzheimer's disease (AD) biomarker research. After adjusting for trust and AD knowledge, Black participants were still more hesitant .Information is a barrier (when absent) to and incentive (when given) for biomarker studies. Reducing burden (e.g., transportation) is essential for recruiting Black older adults.
  • Thumbnail Image
    Item
    Developing and applying potentially scalable recruitment strategies to accelerate ADRD research participation of Black adults
    (Wiley, 2025) Richards, Ralph; Richards, Mollie; Musema, Jane; Tackett, Andrew; Van Heiden, Sarah; Polsinelli, Angelina; Gao, Sujuan; Brown, Steven A.; Unverzagt, Frederick W.; Risacher, Shannon; Adeoye-Olatunde, Omolola; Campbell, Christopher; Shaw, Pamella; Saykin, Andrew; Wang, Sophia; Neurology, School of Medicine
    More than 2 million older Americans from underrepresented racial and ethnic minority groups (URGs) have early-stage Alzheimer's disease and related dementias (ADRD). There are very few scalable recruitment strategies, particularly for Black older adults, to accelerate participation in ADRD research. The Indiana Alzheimer's Disease Research Center (IADRC) and its Community Advisory Board developed and implemented the innovative RAAISE-D Framework. This Framework informed the creation of community-first recruitment strategies designed to accelerate participation of Black older adults in ADRD research. Preliminary outcomes from its implementation included the doubling of Black adult enrollment (46, 13.4% to 101, 26.9%) from April 2020 to April 2024. Black adults were more likely to have normal cognition, be female, and ≤ 12 years of education than non-Hispanic White adults. The RAAISE-D Framework identified key concepts for URG focused recruitment strategies which successfully accelerated enrollment of Black adults in ADRD research and could be generalized to other URGs. HIGHLIGHTS: RAAISE-D Framework provides adaptable URG recruitment strategies. IADRC CAB-researcher partnership was the foundation of community-first methodology. RAAISE-D Framework doubled the Black enrollment in the IADRC in 4 years.
  • Thumbnail Image
    Item
    Impact of Knowledge About Alzheimer’s Disease on Interest in Participation in Biomarker Research
    (Wiley, 2025-01-09) Etchison, Taylor; Eliacin, Johanne; Polsinelli, Angelina J.; Richards, Ralph; Richards, Mollie; Campbell, Christopher; Shaw, Pamella; Gao, Sujuan; Van Heiden, Sarah; Risacher, Shannon L.; Hendrie, Hugh C.; Saykin, Andrew J.; Wang, Sophia; Radiology and Imaging Sciences, School of Medicine
    Background: Previous studies suggest limited knowledge about Alzheimer’s Disease (AD) is a barrier to underrepresented group participation in AD research. Connections between knowledge of AD and factors like social determinants of health or confidence in biomarker research have not been carefully examined. We hypothesized perceived knowledge about AD would be associated with research hesitancy independent of sociodemographics and trust of researchers. Method: The AD‐REACH study surveyed 399 research‐naïve non‐Hispanic Black and white adults 55 years and older living in Indianapolis, Indiana. Participants reported perceived knowledge of AD on a 5‐point scale (5 = “I know what [AD] is, what causes it, and how to manage and prevent it;” 1 = “I know nothing at all”). Knowledge was dichotomized into higher (≥ 3) and lower (< 3) levels. Demographics were compared using chi‐squared tests and t‐tests. Ordinal logistic regression models examined the association between perceived knowledge about AD and outcome variables (e.g., hesitancy towards research participation) and were adjusted for sociodemographics and very high trust of researchers. Result: Those who reported being Black, male, from a higher Area Deprivation Index, or having less than 16 years of education had lower perceived knowledge about AD (Table 1). Trust of researchers was not associated with perceived knowledge. Those reporting lower AD knowledge described more hesitancy to participate in biomarker research (53.0% vs 72.7%, OR 2.50, 95% CI 4.35‐1.39, p = 0.002) and blood draw (62.3% vs 80.9%, OR 2.17, 95% CI 4.00‐1.19, p = 0.012) but not neuroimaging procedures (Table 2). Those with lower perceived knowledge of AD were more likely to need additional information to make decision about whether to participate in research (58.1% vs 29.9%, OR 3.70, 95% CI 9.09‐1.49, p = 0.005) (Table 3). Conclusion: Populations with health disparities report lower knowledge of AD, and lower perceived knowledge is associated with research hesitancy, especially for biomarker procedures. Perceived AD knowledge is also independent from trust, suggesting the feasibility of a two‐pronged intervention to foster diverse participation in AD biomarker research. Future studies will need to confirm these findings in other cohorts and examine how culturally tailored strategies to increase AD knowledge may reduce research hesitancy among underrepresented groups.