Alzheimer's & Dementia Outreach, Recruitment & Engagement Resources
Communication Strategies
- This article examines barriers and facilitators to the enrollment of Asian Americans and Pacific Islanders in a dementia research registry.
- NIH CEAL has created a webpage with resources to help researchers to engage diverse communities in their studies from the ground up.
- This resource describes the most effective strategies to increase research participation among older African Americans, based on an analysis of peer-review studies.
- 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.
- This article highlights how concentrated community memory screening events can be an effective and efficient recruitment strategy for Alzheimer’s disease research.
- 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.
- 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.
Data-Driven Participant Recruitment: Findings from the Alzheimer's Disease Neuroimaging Initiative 3
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...- 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...
- The Michael J. Fox Foundation, which focuses on elimination of Parkinson’s disease, has developed study recruitment materials that are applicable to other areas of disease 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...
- 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...
- 1Florida Alzheimer’s Disease Research Center uses an FAQ format on its website to answer basic questions about clinical trial participation.
- Guidance documents for returning individual and aggregate clinical trial results to participants were developed by the Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard to support the goal of greater transparency in clinical research.
- The University of Pittsburgh Alzheimer's Disease Research Center (ADRC) publishes a biannual, 12-page publication for a lay audience.
- This website provides resources to support effective communications with potential, enrolled, and past participants in clinical trials. The target audience includes sponsors and funders, investigators, study teams, and institutional review boards/ethics committees.
- This audiovisual novella presents the story of a Mexican family that is struggling to figure out what is wrong when their patriarch starts to forget things.
- In collaboration with Nuestra Casa, a local community health advocacy organization, the Stanford Alzheimer’s Disease Research Center (ADRC) designed and successfully implemented a dementia awareness campaign in East Palo Alto, CA. The largely Latino community near Stanford had little knowledge of dementia and its consequences. This article describes the community-based participatory research model that was used to create materials and training for 20 promotoras (community outreach workers). The...
- The NIH website, NIH Clinical Trials and You, contains several pages for researchers and trial sites: Improving Visibility of NIH-Supported Clinical Trial Activities and Results : Describes the NIH policy, similar to the FDA “Final Rule” reporting requirement for funded clinical trials: Trials must be registered at ClinicalTrials.gov, and summary results must be submitted no later than 1 year after the primary completion date. Clearly Communicating Research Results Across the Clinical Trials...
- This community engagement program at the University of Florida bridges the gap between health care and health research by providing health education, health screenings, and wellness resources. It also links participants with clinical studies.
- More than 25 plain-language informational brochures in English have been developed to enable and improve communication between clinical research staff and research participants. Most of the brochures are available in an additional 15 languages.
- This systematic review included 19 studies that involved recruitment and retention of African Americans (15 studies), both African Americans and Latinos (2), and Asians (2). Four major themes were identified for recruitment strategies: community outreach (94.7%), advertisement (57.9%), collaboration with healthcare providers (42.1%), and referral (21.1%). Three major themes were identified for retention strategies: follow-up communication (15.8%), maintain community relationship (15.8%), and...
- This searchable repository of articles related to engagement in research is organized around four types: papers describing engagement experiences; papers on research findings that also report on engagement; studies of engagement practices; and other important works that guide the field, including frameworks, conceptual models, and editorials. The repository is maintained by the Patient-Centered Outcomes Research Institute, which works with healthcare stakeholders to identify critical research...
- This NIA-produced planning guide for investigators, study coordinators, recruitment communications staff, and others involved in clinical research outlines strategies for improving community-based research participation.
- This article explores strategies to improve participation in cognitive aging research by older adults, particularly minority older adults. The cultural aspects of cognitive aging are examined, especially the role of stigma and stereotype threat. The perceptions of cognitive aging of African American and Hispanic older adults are also described. Specific strategies are presented that have been successfully implemented to improve recruitment and retention in research targeting minority older...
- The current state of the literature on recruitment and retention strategies in clinical studies of low-income and minority populations was assessed in a review of 165 studies published in English between 2004 and 2014. Data extracted included information on the study type (descriptive or analytical), study design, study focus (recruitment, retention, or both recruitment and retention), health outcome, specific minority group, special population or age group, whether specific recruitment...
- In-depth, semi-structured, telephone interviews were conducted with 31 research investigators experienced with minority populations, to explore their perspectives regarding how their own racial and ethnic background influenced their ability to recruit minorities. The analysis addressed the benefits and potential risks of racial concordance ("race-matching") in research recruitment (i.e., it is not a "magic pill"), and the importance investigators themselves placed on "being really connected" and...
- Researchers surveyed 1,643 participants to investigate potential motivators, barriers, and facilitators to participation in research that tests a new drug or device. Participants were Caucasian, African American, Hispanic, multiracial, and "other" minorities. Motivators were measured on a scale that ranged from "no influence" (0) to "most influence" (4). Significant differences by race were found for five out of 10 motivating factors. "Risk of unknown side-effects" was the greatest barrier for...
- This article synthesized findings from health research studies that evaluated the cost and effectiveness of different recruitment strategies to inform investigators on designing cost-efficient clinical trials. Researchers identified 10 randomized studies that compared recruitment strategies, including monetary incentives (cash or prize), direct contact (letters or telephone call), and medical referral strategies. Only two of the 10 studies compared strategies for recruiting participants to...
- The authors propose EER a systematic approach to research participant recruitment so as to address the inadequate recruitment of underserved populations The guideline is referred to by the acronym EERC, for evaluate, engage, reflect, and carefully match. These terms stand for: 1) Evaluate the composition of the research team, 2) Engage fully with the community by working with key informants and cultural insiders, 3) Reflect the unique cultural characteristics of the community in the research...
- How professional recruiters approach patients is a critical determinant of enrollment into research studies and clinical trials. Findings indicate that recruiters use several verbal strategies in the communication process, including translating study information (such as simplifying, using examples, and substituting specific difficult or problematic words), using linguistic reframing or metaphors, balancing discussions of research participation risks with benefits, and encouraging potential...
- In this prospective cohort study, 204 adults were invited to join an online survey to assess the likelihood of their participation in clinical research, depending on how the term "clinical research" was defined. Both short and extended definitions were used; the five short definitions were: clinical trial, clinical study, health-related research study, community participatory study, and quality improvement study. The likelihood of participation in clinical research was the lowest when "clinical...
- A telephone survey of 511 people in one Southern state explored the communication sources and perceived effective communication channels and strategies through which African Americans and White individuals receive clinical trial information.
- Recommendations and guidelines to increase the participation of minorities in health-related research typically pertain to research in clinical or laboratory contexts. This article summarizes community-engaged outreach efforts that can be translated into usable strategies for health education research teams seeking to diversify the pool of research participants. The article provides an overview of the various components of a research endeavor that may influence minority participation in health...
- This article describes the challenges encountered in recruiting, into five research studies, Mexican American participants from community settings. Culturally relevant strategies used to recruit are also described. The most effective recruitment strategies reflected the common cultural values of personalismo , simpátia , confianza , respeto , and familismo . García AA, Zuñiga JA, Lagon C. A personal touch: The most important strategy for recruiting Latino research participants. Journal of...
- A telephone survey was conducted with rural and urban residents in South Carolina to examine potential barriers to participation in clinical trials. The survey explored structural and procedural barriers (e.g., limited accessibility) and cognitive and psychological barriers (e.g., fear, distrust). Findings indicated that there were no significant differences between rural and urban residents in their willingness to participate in a clinical trial. However, rural residents were more likely to...
- This paper discusses a variety of methods that were successful in exceeding target recruitment and retention goals in a randomized clinical trial of hearing protector use among farm operators. Recruitment and retention strategies were: based on a philosophy of mutually beneficial engagement in the research process, culturally appropriate, tailored to the unique needs of partnering agencies, and developed and refined in a cyclical and iterative process. These approaches may result in enhanced...
- Rural residents diagnosed with cardiovascular disease (CVD) or with CVD-related risks are underrepresented in behavioral intervention trials. This literature review condensed the evidence and developed a conceptual framework of interlinked, multi-level factors affecting participation. In addition to contextual factors (i.e. patient, community and research levels), common factors impacting rural patients’ intent to enroll included lack of awareness and understanding about behavioral trials...
- In this study, researchers evaluated the perceived success of recruitment and retention protocols for Native Hawaiian/Pacific Islander/Filipino adult populations. Focus groups and questionnaires were used to identify themes related to facilitators and deterrents to participation in clinical trials in these populations. Responses to animated videos and vignettes with actors regarding clinical research participation were analyzed. Researchers found that successful recruitment and retention...
- In this review, researchers summarize some of the available methods to improve Alzheimer’s disease research recruitment, the available literature to support or refute these strategies, and experiences at the Alzheimer’s Disease Research Centers. This article also addresses the application of community-based participatory research principles and the use of participant registries to enhance research enrollment and increase diversity of research samples. Grill JD, Galvin JE. Facilitating Alzheimer...
- In this U.K.-based study, researchers sought to assess the impact on clinical trial recruitment of an incentive of £100 and whether the offer of this payment attracted more elderly and socially deprived patients. The £100 offer led to small but significant improvements in both patient response to a clinical trial invitation letter and in the number of patients who consented to be screened. Yet, the payment did not attract more elderly or socially deprived patients. Jennings CG, MacDonald TM, Wei...
- Online advertising is a new frontier in research recruitment and Google Adwords is one method of online advertising. However, only a handful of studies have described its cost and effectiveness and none have focused on older adults. This study created a Google Adwords campaign to recruit family caregivers of people with dementia. The study found that the ads were viewed more than 450,000 times in a 6-week period, but only 49 surveys were completed, at a cost of $122 per survey. The paper...
- This study examined recruitment and retention strategies used among a group of older community-dwelling stroke survivors for a randomized clinical trial on exercise. A total of 393 referrals were received, 233 persons were screened, and 145 stroke survivors were enrolled in the study. During 3 years of recruitment, this study achieved 97 percent of the enrollment target and enrolled 62 percent of those screened. Of those enrolled, 21.4 percent were recruited through paid advertising and 78.6...
- This study assessed the feasibility, benefits, and challenges of recruiting for research studies related to consumer health information technology by utilizing Facebook.
- This study tested different types of appeals to participate in research studies. A random sample of 2,014 caregiving units (composed of an older adult, a family member, and a home care worker) were obtained from a list of Israeli long-term care insurance beneficiaries. Participants received either a formal and succinctly phrased letter followed by a recruitment phone call; the formal letter, but a revised, more personal recruitment phone call; or a revised letter and a revised phone call. The...
- This five-page document presents a standardized retention plan for prevention, symptomatic, and observational trials conducted at the Center for Alzheimer Research and Treatment (CART), Brigham and Women’s Hospital and Harvard Medical School. The plan describes strategy and tactics designed to keep patients enrolled in clinical trials, and from discontinuing their participation or dropping out. It covers pre-initiation, study start-up, and study initiation phases. For a copy of the retention...
- This article reported on challenges and strategies related to recruitment of minority breast cancer survivors, particularly those with lymphedema, into the WISER Survivor Trial. The authors attributed successful recruitment to several factors, including diversity and cultural appropriateness of study staff; tracking the results of multiple recruitment methods and abandoning the ones with low yield; using active (e.g., mailings) and passive (e.g., printed materials and website) recruitment...
- Many research studies report difficulties recruiting enough participants, adding to the time and cost of the study and potentially jeopardizing the generalizability of findings. This article reported on recruitment strategies used in nine dementia-related studies conducted in Australia. Articles, notices, or advertisements in targeted specialist newsletters were the most cost-effective method of recruitment. Online and social media were low-cost but not reliably effective. Beattie E, Fielding E...
- Researchers' use of Internet-based surveys and recruitment strategies has increased, but there is little knowledge about their use in different age groups of former dementia caregivers. This analysis describes the use of Internet-based recruitment in young and middle-aged (age 18-64), young-old (age 65-74), and older-old (age 75 and older) former dementia caregivers. A four-step recruitment strategy encompassing a combination of Internet-based and non-Internet-based recruitment strategies was...
- This review examined 26 studies, published between 1995 and 2012, that reported on recruitment of persons of different cultural and ethnic backgrounds. Authors extracted data on the type of recruitment strategies used and overall reported effectiveness of each strategy. They then developed a list of effective strategies in recruiting persons of diverse ethnic and cultural backgrounds. Strategies included both proactive recruitment (e.g., face-to-face meetings) and reactive recruitment (e.g...
- This study evaluated the yield and cost of three recruitment strategies—direct mail, newspaper advertisements, and community outreach—for identifying and enrolling dementia caregivers into a trial testing a nonpharmacologic approach to enhancing quality of life of individuals with dementia and their caregivers. A total of 237 dyads enrolled. The total cost of recruitment was $154 per dyad, with direct mail found to be the most effective and least costly method, at $63 per dyad. That compared...
- This study used Community Partnered Participatory Research (CPPR) to address low participation of racial/ethnic minorities in medical research and the lack of trust between underrepresented communities and researchers. Residents of a South Los Angeles neighborhood were exposed to research recruitment strategies: referral by word-of-mouth, community agencies, direct marketing, and study participants. Study completion rates varied by recruitment method: referral by community agencies (88.7%)...
- The goals of the Arizona Alzheimer's Registry were to increase awareness of Alzheimer's disease research among adults age 18 and older and to accelerate enrollment into clinical studies sponsored by the Arizona Alzheimer's Consortium. Participation was by open invitation. Earned media was the most effective recruitment strategy. More than 1,000 people consented and underwent an initial cognitive screening. The Registry created an infrastructure and process to screen and refer a high volume of...
- A multipronged approach led to the successful recruitment of 303 diverse, community-residing elders with memory impairment for an intervention trial. Key factors for success included using a range of evidence-supported outreach strategies, forming key strategic community partnerships, seeking regular stakeholder input through all research phases, and obtaining "buy-in" from community stakeholders by aligning study objectives with perceived unmet community needs. Most referrals came from letters...
- One challenge in cognitive-decline prevention trials is sample recruitment bias—willing volunteers could be socially active, in relatively good health, and have high educational levels and cognitive function, which could reduce the generalizability of study results and mask trial effects. The authors developed a randomized, controlled trial to examine whether conversation-based cognitive stimulation delivered through personal computers, a webcam, and the Internet would have a positive effect on...
- The sponsors of the PEARLS (Program to Encourage Active, Rewarding Lives) study, a home-based depression-care management program for elders, partnered with three social service organizations in the Seattle area to identify hard-to-reach populations, barriers to reaching them, and strategies for improving recruitment and retention. Based on semistructured interviews with study staff and former PEARLS participants, several themes emerged, including trust, cultural appropriateness, meet them where...
- The authors describe strategies used to recruit older adults to a clinical trial of a behavioral intervention to improve adherence to taking antihypertensive medication. Four themes are explored: accessing an appropriate population, communication and trust-building, providing comfort and security, and expressing gratitude. Recruitment success was linked to cultivating relationships with community-based organizations, face-to-face contact with potential study participants, and providing a service...
- In this article, researchers explored two different approaches during a 6-month process of recruiting 212 individuals to an observational study. For the first 3 months, prospective participants received a phone call in which a member of the research team explained the study and invited them to participate. These participants received an information sheet by mail, and the study was re-addressed at the patient’s clinic appointment, at which the patient was formally invited to participate. In the...
- Recruiting minorities can be challenging for clinical researchers. This study examined the recruitment strategies used by "comprehensive" versus "traditional" researchers. Results of an online survey, conducted in 2010, found that "comprehensive" researchers used more, and more diverse and active, recruitment strategies, while "traditional" researchers used fewer and more passive strategies. The authors found that comprehensive researchers were more likely than traditional ones to 1) report...
- While recruiting for the Anti-Amyloid Treatment in Asymptomatic Disease (A4) Trial, investigators compared one-on-one with small-group recruitment sessions. Of the 127 potential participants, most chose small-group sessions. Researchers found that small-group sessions yielded a recruitment rate of 90 percent, while one-on-one sessions led to a 67 percent recruitment rate. In addition, small-group sessions contributed to significantly shorter median time for consent processes (20 versus 60...
- This editorial in Nature discusses how thanking participants in clinical trials is a simple but effective strategy for making them feel like partners in research.
- The Hellman Visiting Artist Program is a community outreach initiative from the UCSF Memory and Aging Center to encourage artists to explore their art through an interaction with the topic of dementia and people affected by the disease. Each year, an accomplished artist is invited to visit the center to learn about neurodegenerative disorders like Alzheimer’s disease and frontotemporal dementia and to participate in a creative exchange with researchers, patients, and families. The program...
- The website of the University of Kansas (KU) Alzheimer’s Disease Center includes an iframe , “Currently Enrolling Alzheimer’s Disease Studies,” which lists basic information about currently recruiting studies and gives contact information (phone number, website) for consumers and medical providers if they are interested in following up. Studies are categorized (e.g., observational studies, prevention studies, treatment studies). Each description includes the study’s title, type of study...
- Lifestyle Enrichment for Alzheimer’s Prevention (LEAP!) is a 6-week program on the basics of Alzheimer’s prevention sponsored by the University of Kansas Alzheimer’s Disease Center and its partners. Program topics include nutrition, physical activity, social-emotional health, sleep, and cognitive engagement. A full-color, one-page flyer was used to promote the 2017 program.
- The Accrual Quality Improvement Program (AQuIP) of the Division of Cancer Prevention, National Cancer Institute, produced "The AQuIP Toolkit" as a user-friendly library of recruitment resources. The toolkit includes a recruitment instruction manual, templates for recruitment materials, an image library, and references for additional information.
- Penn Memory Center researchers used a multi-phase, theory-driven research process to craft and test advertising messages that would motivate African-American and non-Hispanic white adults to accompany their parent, step-parent, or parent-in-law to see a specialist for a memory evaluation. Staff members created a two-page handout that features images of several full-color ads and encourages organizations that provide services to older adults to make use of them, free of charge. Penn Memory Center...
- This project of award-winning photographs of caregivers is featured in the Penn Memory Center's creative space, "Making Sense of Alzheimer's."
- This 40-page guide provides outreach strategies and resources for providers and coalitions to better support African Americans with end-of-life issues. Chapters are: Overview, African American Focus Group Findings, Strategies for Reaching Out to African American Communities, Model Outreach Programs and Initiatives, and Resources for African American Outreach. The guide was produced in 2008 by Caring Connections and the National Hospice and Palliative Care Organization.
- The Penn Memory Center’s coordinator for diversity research composed a template for emails to be sent individually to community leaders in the African-American communities of Philadelphia. The message describes the purpose and activities of the Penn Center and its community outreach plan. A list of organizations with which the center hoped to collaborate was included. The message concluded with a request to meet so that the coordinator could obtain community input on the research recruitment...
- Making Sense of Alzheimer's is a creative space designed to help people better understand Alzheimer's disease and make sense of it.
- This photography project allowed older adults living with mild cognitive impairment to document their lives as they address their condition. Using cameras provided by the Penn Memory Center, participants photographed the people, places, and objects that defined their daily lives. The photos served as a tool to facilitate conversations with researchers.
- Wayne State University, University of Michigan, and Michigan State University provide the faculty who jointly lead the Healthier Black Elders Center (HBEC). Faculty leaders, staff, and the Community Advisory Board members work together to improve the health of older African Americans in Detroit through a combination of education and research.
- A recruitment alert is used in the University of Michigan electronic medical record (EMR) platform, EPIC–MiChart, to identify patients who might qualify for research studies conducted by the Michigan Alzheimer’s Disease Research Center (MADRC). This recruitment alert functionality has proven to facilitate recruitment and decrease the enrollment period for a study. It can also reduce the time and effort of study coordinators to identify potential patients for a study. Additionally, recruitment...
- This online web portal from the National Institutes of Health (NIH), includes information for the public on participating in a clinical trial. The portal includes information for parents and family members, basic information on clinical trials, and personal stories from trials participants.
- ResearchMatch brings volunteers together who are trying to find clinical trials and research studies. The site emails participants about studies that may be a good fit for them.
- The Wake Forest School of Medicine Alzheimer’s Disease Research Center developed a physician referral pad for doctors to recommend patients into a memory study. The small pads fit in a physician’s lab coat and are printed in neon green so they do not get lost in the patient’s other visit papers.
- The Wake Forest School of Medicine Alzheimer’s Disease Research Center designed artwork for printing on church hand fans to promote Alzheimer’s disease research. The catch phrase, “Research brings Knowledge. Knowledge brings Answers. Answers bring Hope!” was developed to demystify research for people living in rural North Carolina.
- The National Strategy for Recruitment and Participation in Alzheimer’s and Related Dementias Clinical Research outlines practical, proactive approaches to help study sites engage a wider, more diverse number of volunteers.
- A checklist written in Spanish that provides important steps to take after an Alzheimer's Diagnosis.
- This online article is designed as a guide to support healthcare professionals in managing older patients with cognitive impairment or dementia, suggests care strategies following patients' diagnostic evaluation. The article discusses developing management and patient support plans, tips for communicating with the patient and caregiver, ways to discuss clinical trials, and resources for patients and professionals to learn more.
- This five-page document is intended as a tool to support investigators, research managers, recruitment/outreach staff, research assistants, and coordinators involved with the Harvard Aging Brain Study (HABS) and to help inform sponsors of the resources and the planning process used to support recruitment needs. Study-specific needs are addressed during the pre-initiation stage by the HABS research team, and the plan is tailored to support study-specific recruitment needs. Recruitment efforts are...
- This five-page document presents a standardized recruitment plan for prevention, symptomatic, and observational trials conducted at the Center for Alzheimer Research and Treatment (CART), Brigham and Women’s Hospital and Harvard Medical School. The plan covers pre-initiation, study start-up, and study initiation phases. It is intended as a tool to support investigators, recruitment/outreach staff, research assistants, and coordinators and to help inform sponsors of the resources and the planning...
- This website is designed to help recruit and retain racial/ethnic minorities into therapeutic clinical trials to reduce cancer-related health disparities.
- The C2C registry is used to register and notify people of opportunities to participate in clinical research studies conducted by UC Irvine for Memory Impairments and Neurological Disorders.
- This postcard is distributed at community outreach events of the UCI Institute for Memory Impairments and Neurological Disorders (UCI MIND). Check-off options include: add your email to the UCI MIND registry; request to be contacted about research participation or philanthropic opportunities; or add your name to the email or mailing list. Cards can be turned in at the event or mailed.
- This seven-page handout presents frequently asked questions and sample answers for community outreach volunteers. Questions relate to Alzheimer’s disease risk, diagnosis and treatment, and research participation.
- This video was created to help recruit participants into the Exercise in Adults with Mild Memory Problems (EXERT) trial.