Research Articles

This article provides a framework for planning disclosure and consent procedures for research studies involving participants with dementia.

This resource summarizes key insights from the second annual Latinos & Alzheimer’s Symposium.

This resource describes the most effective strategies to increase research participation among older African Americans, based on an analysis of peer-review studies.

This article examines barriers and facilitators to brain donation in a group of Latino adults.

This resource describes barriers and facilitators of dementia care through the lens of African American caregivers in rural Kentucky.

This resource explores different ways clinical researchers adapted their recruitment strategies during the COVID-19 pandemic.

This research article describes how Alzheimer’s disease clinical trial participants view the role of the study partner and how their view informs the selection process.

This article explores Alzheimer’s disease knowledge and perception within a Native American community.

This resource explores how academic health centers can more closely engage with their surrounding communities.

This article describes how considering cultural factors can improve the care and recruitment of people with dementia from underrepresented minority groups.

In this review article, researchers summarize the importance of caring behaviors in the recruitment of older African Americans with chronic illness.

In this review article, researchers discuss the ethical aspects to consider when recruiting people with dementia for clinical trials.

This resource examines how the U.K.-based Join Dementia Research registry strongly bolstered recruitment efforts.

This article explores why and how to incorporate critical race theory into dementia caregiver recruitment efforts.

This resource summarizes the results from focus groups with African American older adults in which they discuss their beliefs about participation in clinical research.

In this article, researchers examine the effectiveness of a community-based strategy to recruit participants for a dementia study.

This article examines how race and ethnic background impacts sources of recruitment and eligibility for an Alzheimer’s preclinical trial.

This study tested the effectiveness of different strategies to improve the clinical trial experiences of hospitalized older adults with dementia and their caregivers.

In this study, researchers examined the perspectives of Asian American and Pacific Islanders regarding their participation in a research recruitment registry.

This review article from NIA provides strategies to increase awareness and participation of Hispanics/Latinos in AD/ADRD clinical research studies.

Using research results, Alzheimer's disease scientists developed materials that communicate information to participants about the risk of developing Alzheimer's.

This article highlights how concentrated community memory screening events can be an effective and efficient recruitment strategy for Alzheimer’s disease research.

Researchers assessed direct-to-consumer APOE genetic testing usage and their attitudes toward using this information in clinical trial recruitment.

This article describes how the University of Pittsburgh’s Alzheimer’s Disease Research Center used research participation stories to create messaging for recruitment materials.

This paper describes the researchers’ experiences in establishing and maintaining a diverse Alzheimer’s Disease Prevention Registry.

A report that overviews the Washington University School of Medicine Knight ADRC's “African American Participation in Alzheimer Disease Research: Effective Strategies” Workshop on research participation.

This research examined the effectiveness and differences in using both traditional and social media materials for the recruitment of African American versus non-Hispanic white participants.

This research article describes the Minority Aging Research Study's brain donation challenges, processes, and successful procurement with older African American adults.

A research article from the Rush Alzheimer’s Disease Research Center helps researchers learn about their participants and procedures to better advance the science of Alzheimer’s and related dementias in Latinxs.

Gene Test or Not? is an online decision-making tool designed to help people decide about whether they should have the APOE genetic test.

This paper describes the development of a standardized approach to disclosing amyloid imaging research results to people with mild cognitive impairment.

The authors developed a document for use with potential study participants that describes the process of amyloid imaging and the implications of amyloid imaging results.

This paper outlines a framework created by the Alzheimer’s Prevention Initiative Genetic Testing, Counseling, and Disclosure Committee for large-scale disclosure of APOE results to study participants.

To test an intervention for increasing Alzheimer’s disease literacy among African Americans, the researchers enrolled 193 African American community-dwelling adults using culturally tailored education and messaging.

Researchers looked at how enrollment factors made a difference, broken out by race, on the progression of mild cognitive impairment and dementia. Using Alzheimer’s Disease Research Center data, they examined the rate of impairment between white participants and Black participants with age-at-progression survival models.

According to the article authors, the ideal participants for Alzheimer's disease clinical trials would show cognitive decline in the absence of treatment (i.e., placebo arm) and also would be responsive to the therapeutic intervention being studied (i.e., drug arm). This investigation tested whether machine learning models can effectively predict cognitive decline in people with mild to moderate Alzheimer’s disease during the timeframe of a phase III clinical trial. Data from 202 participants...

The authors of this integrative review found that passive, indirect recruitment strategies have been the default approach for enrolling older African Americans into chronic illness-related research studies, including Alzheimer's studies. They recommend the use of proactive, culturally appropriate recruitment approaches, combined with caring recruiter behaviors, that explicitly target older African American adults and that involve direct interactions between prospective participants and the...

This article describes a validated two-step process for recruiting asymptomatic amyloid-positive individuals into clinical trials. The process was tested using cohorts from three Alzheimer’s studies (ADNI-MCI, ADNI-CN and INSIGHT). During a pre-screening phase, researchers pre-selected a subset of individuals who were more likely to be amyloid positive, based on the automatic analysis of data acquired during routine clinical practice, before doing a confirmatory PET scan for these selected...

For the Alzheimer's Disease Neuroimaging Initiative 3 (ADNI3) trial, 462 new participants were enrolled. Recruitment metrics were recorded on 82,003 unique visitors to the recruitment website and 3,335 calls to study phone numbers. The recruitment sources that produced the most screening and enrollment included online advertisements, local radio and newspaper coverage, and emails and referrals from patient registries. According to the authors, ADNI3 is an example of how a data-driven approach to...

The rarity of disorders caused by frontotemporal lobar degeneration (FTLD) leads to recruitment challenges for related clinical trials and difficulties with adequate power to detect treatment effects. The authors of this systematic review recommend developing personalized endpoints that are most clinically meaningful to individuals and their families, devising more powerful approaches to analyzing heterogeneous clinical and magnetic resonance imaging data, and developing new fluid biomarkers and...

Research participants who intend to donate their brains to a study on Alzheimer’s and related diseases are reliant on family members to fulfill the donation plan. Thus, family members play a pivotal role in increasing brain donation rates, particularly among underrepresented groups. In this study, researchers conducted focus groups with a total of 15 Latino adults who each has a parent age 65 or over. Analysis of the discussions support inclusion of family members during all stages of the...

People with Alzheimer’s disease are vulnerable to therapeutic misconception, particularly, the conflation of routine clinical care and scientific research. This misconception can compromise the informed consent process by causing prospective participants to underappreciate the level of risk involved in trial participation. The authors advocate for a more comprehensive informed consent process that accounts for the uniqueness of Alzheimer’s disease, creates a more productive and clear...

Using the CTSdatabase, a registry with more than 60,000 participants, the study authors found that nearly 4% of participants who were screened for memory loss studies visited more than one site within two years. Potential Alzheimer’s participants who went to additional sites did so predominantly for nonmemory conditions, often major depressive disorder or schizophrenia. According to the study authors, multiple enrollments confound efficacy and safety signals in clinical trials. They speculate...

For this study, 10,450 participants enrolled in an initial cohort study were asked to complete a six-lesson interactive education course, AlzU.org, about Alzheimer’s disease. Participants in the highest lesson completion group demonstrated the greatest screening rates for the Anti-Amyloid Treatment in Asymptomatic Alzheimer's Disease (A4) trial. In a subsequent randomized-controlled trial, 351 new participants were enrolled in the six-lesson course (n = 180) versus a time-neutral control course...

This systematic review examined 22 published reports describing recruitment and retention of individuals from underrepresented backgrounds in Alzheimer’s disease research or underrepresented participants’ perspectives regarding participation in such research. The authors concluded that considerable scientific gaps limit the use of prior efforts by scientists to bolster inclusion of members from underrepresented groups. They recommend that future studies on this topic use improved methodological...

In this British study, 33 researchers working on dementia trials in care homes completed an online, qualitative questionnaire outlining their experiences and the perceived benefits and challenges of data collection from people with dementia (as opposed to only collecting data from caregivers or family member proxies). Five main benefits from obtaining the direct perspective of people with dementia in research were identified: (1) improving the delivery of person-centered care, (2) hearing the...

Patients with Parkinson's disease face barriers that can make it difficult to travel to clinical trials. These include having dementia, loss of driving ability, timing of medications, impact of reduced mobility, and bowel and bladder concerns. Many of these barriers also affect patients with Alzheimer's disease. In this pilot project, researchers sought to assess the feasibility and effect on research participation of prearranged rides through a third-party ride sharing service for research...

The aim of this study was to explore the feasibility of a 45-minute, culturally tailored presentation on Alzheimer's disease for professionals serving the Latino community and Latinos served by community organizations. Five lunch-and-learn events (“Smart Aging” presented in English to professionals and “Envejecimineto Digno” presented in Spanish to served Latinos) were conducted with a total of 40 professionals and 37 served Latinos. Researchers increased the pool of participants by scheduling...

This article describes the information-gathering process that led to the creation of two educational resources designed specifically for the Hispanic/Latino population, The Precious Gift Brain Donation Brochure and the Brain Donation Steps Handout. In a review of the National Alzheimer’s Coordination Center’s (NACC) database for June 2005–May 2016, the authors found that people who self-identify as Hispanic/Latino made up only 8 percent of participants enrolled and 3 percent of the deceased...

To help increase participation of Hispanic older adults in dementia research, this trial aimed to assess the effectiveness of a culturally tailored recruitment educational strategy for older Hispanic adults. Researchers held six one-session tailored dementia education events at trusted community senior centers. The participants were given contact information to complete if they were interested in dementia research and enrollment into the National Alzheimer’s Coordination Center was tracked...