Review of Projects Funded by the PAR-18-749 Grant
Titled “Examining Diversity, Recruitment, and
Retention in Aging Research

Introduction
Overview
Map
Projects
Summary
Accolades
Resources

Introduction

This report serves to identify, describe, and review the projects funded by the NIH grant PAR-18-749 titled “Examining Diversity, Recruitment, and Retention in Aging Research.” The projects described below were identified through internet search, the NIH RePORTER website, and by contacting the PAR-18-749 grant manager at the National Institute on Aging (NIA), Dr. Cerese Elliot.

Overview of PAR-18-749 Funded Projects

The findings of this search revealed 15 ongoing projects. Overall, they varied somewhat in their respective missions and methods, but they all proposed interesting methods to achieve their aims. Out of the 15 projects, 8 explicitly identified the creation or improvement of a registry of participants to increase the ease of recruitment into research studies. Nearly all the projects had multiple aims, including educating members of their target demographics, establishing community partnerships, developing registries, and identifying effective and efficient ways of recruiting participants in aging research. At the time of this writing, 6 projects are in their first year of funding, 4 are in their second year, and 5 are in their third year. Although most projects had their own webpage or website, several were difficult to find, which highlights the importance of utilizing appropriate key words and utilizing Google to improve your website’s ranking.1, 2

The projects with websites that were the most clear and easy to use provided very clear headings, had an overt option to translate their webpages into different languages (this often depended on goal of the project), and included resources for both potential participants and researchers. All the projects were affiliated with an academic institution, which some leveraged to their advantage by using their institution’s websites to provide links and news updates to a broader audience. Though metrics of efficacy were not formally available, projects that appeared most successful used a multifactorial approach – they engaged their demographics in a variety of culturally-sensitive ways. For example, The Florida Registry for Aging studies employs a 25-member advisory board, where members are located throughout the state and include state and local advocacy groups such as the Alliance on Aging, senior and community centers, and even four pastors from different denominations. Project PIs generally agreed that there were benefits to being culturally sensitive. For example, both Dr. Van Park of the CARE project and Dr. Adriana Perez of the project titled “Leveraging the national infrastructure of trusted organizations to increase representation of Latinos in dementia research” agreed that not all members of their target demographics (Asian American and Pacific Islanders [AAPI] and Hispanics/Latinos, respectively) should be thought of as a homogenous group. They tailored their team members and resources to reflect the dialects and culture of their heterogenous demographics. They offered advice like “not using Google translate” and suggested advisory boards made up of members in the communities they were targeting. Language like “listening sessions” was preferred over “focus groups.” A virtual conference with several PIs speaking on inclusive recruitment can be found online3.

Overall, there were many things to learn from the investigation of these projects. Below, a table outlining each of the 15 studies, their PIs, organizations, overall goals, and main website features (if they had one). Finally, brief reviews of each of the projects including their detailed abstracts are included after the table.

Florida Registry for Aging Studies

Florida International University

The primary goal is to have a population of diverse older adults ready to participate in NIA funded clinical research studies. They aim to understand how intergenerational influence can be leveraged to recruit and retain older adults into research.

Project # 1R24AG067951-01
Funding Year: 2


Project Abstract
Recruitment and retention of older African American [AA], Latino/Hispanic [LH], and Caribbean [CN] adults into clinical research continues to be a significant challenge. Exploring younger family members' (25-64 years) influence on recruiting older adults (65 years and older) into aging research is particularly important since many culturally diverse adults consult family members when making healthcare treatment decisions. Therefore, the focus of the current proposal is to understand how intergenerational influence (IGI) – the influence of one generation on another in terms of the transfer of skills, attitudes, preferences, values, and behaviors – can be leveraged to recruit and retain older diverse adults into clinical research. We use the Theory of Reasoned Action (TRA) and IGI to guide our research. The primary goal is to have a population of diverse older adults ready to participate in NIA funded clinical research studies. Specific aims of this study are 1) to identify strategies that promote recruitment and enrollment of diverse older adults into aging research; 2) implement a communication plan to increase awareness of and willingness to participate in research and 3) implement a statewide registry of AA, LH and CN older adults ready to participate in NIA- funded clinical research. To the best of our knowledge, this is among the first to propose an organized plan specifically designed to increase our understanding of younger and older diverse adults' knowledge of research participation, and then translate this information into a strategic plan to recruit and enroll older diverse adults throughout Florida into a registry.

Main Website Features
After speaking with Dr. Gaillard, I was told that there is no website yet, however one is currently under development.

Notable Highlights
The PI for the study, Dr. Trudy Gaillard, emphasized the development of a diverse group of members as an advisory board. At each step of their decision-making process, the project team gets the advisory board to gain insights and suggestions. The research team also noted that a majority of the potential participants they spoke with actually preferred to receive mail to get updates. However, it bears mentioning that other PIs have noted that email, text, and social media networking has been effective for them, so perhaps a multi-pronged approach is best. Finally, Dr. Gaillard mentioned that they have had success communicating via local newspapers and suggested engaging with different local community groups, including religious organizations of different denominations. 

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The Engaging Communities of Hispanics for Aging Research (ECHAR) Network

University of Houston
https://www.echarnetwork.com/about-us.html

The primary goal is to develop and maintain an interdisciplinary network of researchers, community leaders, volunteers, and others to educate and motivate Hispanics to participate in Alzheimer’s disease research.

Project # 1R24AG065170-01
Funding Year: 3


Project Abstract

Hispanics/Latinos (H/Ls), the largest ethnic minority in the U.S., are 50% likelier than non-Hispanic whites to develop Alzheimer’s disease (AD). H/Ls also live longer, develop AD symptoms earlier, are diagnosed at later stages, and are less likely to be treated. It is projected that U.S. H/Ls living with Alzheimer’s disease related dementias (ADRD) will increase by over 800% by 2060. Despite comprising 17% of the U.S. population, H/Ls represent less than 1% of participants in NIH-funded clinical trials and less than 8% of NIH AD Research Centers, greatly limiting understanding of underlying causes of disparities. There is a critical need to increase recruitment of H/Ls into AD research, but health literacy gaps may impact research participation. Without engaging H/Ls to address AD health literacy, engaging larger numbers of H/Ls into research will be unlikely. The long-term goal of the proposed Engaging Communities of Hispanics for Aging Research (ECHAR) Network is to address effective recruitment of H/Ls into aging and ADRD research. The overall objective of the proposed collaborative, transdisciplinary network is to engage, educate, and motivate H/L community members for participation in ADRD research by addressing ADRD-related communication. Resting on a central hypothesis that poor health literacy sustains health disparities, examining and leveraging community knowledge will inform development of targeted recruitment strategies. Given the nature of this complex, multi- factorial problem, effective recruitment of H/Ls must include a collaborative, multidisciplinary approach. Targeting the stated goal, the ECHAR Network capitalizes on the combined strength of community residents and patient/volunteer liaisons, health agencies and community-based organizations, and researchers in two metro areas home to nearly 1.2 million H/Ls. Through use of a novel community-based participatory method known as Boot Camp Translation (BCT), ECHAR aims to 1) inspire and recruit community members and patient/volunteer liaisons to become part of the recruitment infrastructure, 2) develop innovative community- relevant Alzheimer’s-related awareness, education, and recruitment materials, and 3) support research infrastructure and facilitate enrollment of H/L individuals entering aging and ADRD research. These aims are in line with the NIA National Strategy for Recruitment and Participation in ADRD Clinical Research. By the end of this project, ECHAR will have: (1) established and trained community advisory committees on ADRD; (2) developed key, culturally informed, ADRD-related materials as well as dissemination and evaluation strategies for H/L recruitment into aging and ADRD research; and (3) developed sustainable research infrastructure to enhance outreach by supporting health disparities investigators and pilot grants.

Main Website Features
There is a very polished and easy to find website for ECHAR. It contains 7 clear sections to navigate the website and can easily be switched from English to Spanish. Good resources for researchers.

Notable Highlights
This project’s website had the most aesthetically modern look, while also managing to maintain clarity, good function, and resources for both researchers and participants (although it is clearly more geared towards researchers). The website had 7 sections, Home, Background, Inclusion Science, Participate in Research, Researcher Resources, About Us, and Contact. The website can easily be switched from English to Spanish, and there are some great videos on the researcher resources page. They also encourage other projects to track progress for recruitment practices, which is an excellent idea that should be ubiquitous and public, and they provide a formula for such tracking: RSF = (participants yielded + 1)/(contact efforts made + 1).

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Aligning PCPs and Patients with Alzheimer’s Research Efforts: MyAlliance for Cognitive Health

University of Kansas Medical Center
https://www.kumc.edu/kuadc/join-myalliance-for-brain-health.html

The primary aim for this project is to increase participation in research and emphasize under-represented groups (e.g., African Americans, Hispanics, and rural residents) by developing and managing the MyAlliance network - a PCP network, online registry, and community network of stakeholders. MyAlliance leverages the existing infrastructure of local PCPs to facilitate ease of exposure to studies to patients.

Funding Year: 2


Project Abstract
New models for recruiting research participants are required to support current and future trials. Recruiting adequately diverse samples of research participants is among the biggest challenges slowing research efforts to treat and prevent Alzheimer's disease (AD). Study populations often fall short in representing the genetic, ethnic, racial, and socioeconomic diversity necessary to generalize trial results while the speed of recruitment into trials directly impacts the cost and time to complete studies. These issues are only worsening as the number and size of current and planned trials have dramatically expanded. The University of Kansas Alzheimer's Disease Center (KU ADC; P30AG035982) created MyAlliance for Cognitive Health (MyAlliance) to accelerate participation in research and emphasize reaching under- represented groups (URG: predominantly African Americans, Latinos, and rural residents). The Kansas City region and the state of Kansas are increasingly diverse (>20% minority). MyAlliance is a sustainable and reproducible strategy for engaging a diverse population through 1) a PCP Network to improve dementia care through a financially sustainable Chronic Care Management program, 2) a Patient Network (MyAlliance Research Registry, derived from patients in the PCP network), and 3) a Community Network of diverse stakeholders delivering robust outreach and education. The sustaining value of MyAlliance is its clinical mission to improve care for all patients and families dealing with dementia. MyAlliance will support PCPs in community practice – emphasizing practices serving a high proportion of URG – with social work Navigators to deliver Chronic Care Management services for their dementia patients. This clinical value is the engine to ensure consistent PCP engagement over time and sustain the network to create a permanent recruitment infrastructure in the community. This R24 award will result in new approaches, content, and tools that will be portable to the AD Center network and beyond to enhance national research recruitment efforts and work to change the culture of research recruitment in the community by linking, aligning, and engaging PCPs, patients, and community stakeholders with research efforts.

Main Website Features
Their webpage is attached to the University of Kansas Medical Center website. It is a sign up to receive information via email or text (coming soon).

Notable Highlights
Unless there is another, more challenging to find webpage, their main webpage can be found in the University of Kansas Medical Center website. Though in some ways this can be beneficial by using the existing infrastructure and resources of the medical center, it is not quite user friendly. It would be useful to know how much traffic a webpage such as this gets per month, but such data is likely difficult to acquire. However, by simply having a webpage where users can simply select what resources and information they want to receive and how they want to receive it (for now it is just email but texting is coming soon), it does simplify the process for those who actually reach the webpage.

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Leveraging the national infrastructure of trusted organizations to increase representation of Latinos in dementia research

University of California San Francisco

The overall goal is to establish a recruitment consortium to help recruit Hispanic participants into dementia research. Most of their work is in North Philadelphia, Miami, and Central City in South Phoenix. Three specific aims for the project are: 1) finalize facilitators and barriers to establishing the consortium, 2) build and finalize its resources, and 3) establish and evaluate the consortium recruitment intervention in a clinical trial.

Project # 1R24AG071456-01
Funding Year: 1


Project Abstract
The underrepresentation of Latinos in dementia research is a public health issue because Latinos are one and a half times as likely to have Alzheimer's disease than Whites, yet less then 1% of study participants in clinical trials on dementia are Latino. This underrepresentation reduces the generalizability of findings and hinders the understanding of the mechanisms of dementia, further widening health disparities. Specific efforts to recruit Latinos in dementia research have leveraged community engagement strategies involving partnerships between researchers and community-based organizations (CBOs). The involvement of trusted CBOs was critical to foster trust in researchers. However, community engagement strategies take a long time to develop and are limited to specific geographic areas (e.g., cities). A missed opportunity is the fact that many trusted CBOs have national reach. Partnering with trusted CBOs that have national reach could potentially provide the infrastructure needed to rapidly implement scalable recruitment strategies nationwide. To leverage the infrastructures of trusted CBOs, we propose to establish a consortium driven by Latino stakeholders and involving national-reach CBOs that are trusted within Latino communities. In preliminary studies we already identified the National Association of Hispanic Nurses (NAHN) and the Alzheimer's Association (ALZ) as relevant CBOs with national reach, that are well-trusted in Latino communities. In this new paradigm, the synergistic endorsements of the NAHN and ALZ will foster Latinos' trust and participation in studies supported by the consortium. We aim to establish a Consortium in 4 sites of a multi-site NIA-funded clinical trial drawing upon the expertise of our multidisciplinary research team, which includes collaborators from the NAHN and the ALZ, a Latino messaging designer and a Latino organizational consultant, plus researchers with expertise in implementation science and community engagement strategies for recruitment in Latino communities. We will use the Collective Impact conceptual model and the Ford et al. recruitment framework to guide our work. Our research has 3 specific aims: 1) Finalize facilitators and barriers to establishing the recruitment consortium, 2) Build and finalize the resources of the recruitment consortium and 3) Establish and evaluate the Consortium recruitment intervention in a large clinical trial. The proposed project will help accelerate needed participation of Latinos in dementia research. Its approach can be replicated in other sites nationwide and adapted to accelerate recruitment of other racial/ethnic minorities and other underrepresented groups into dementia research and in other domains.

Main Website Features
No central website found (project is in its first year of funding).

Notable Highlights
Since this project is specifically targeting Hispanic communities, they work very closely with the National Hispanic Council on Aging, which holds town halls across the country. This partnership has allowed them to notice regional differences in older Hispanics, which help them to understand how to best communicate with them. The project team is also just beginning to use social media as a means of reaching their demographic. Though they are beginning to use Facebook, they primarily use traditional ways of outreach such as the radio and flyers. Dr. Adriana Perez of the project stated that their team did a quick review of clinical trials.gov and has found an increasing requirement for English fluency among the active trials. She asserts that this is an immediate recruitment bias, particularly in higher poverty areas. Though there is no evident website available yet, it does appear that they are working towards developing one.

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Recruitment Accelerator for Diversity in Aging Research, Cognitive Loss and Dementia (RADAR-CLD)

Icahn School of Medicine at Mount Sinai
https://www.radar-cld.com/

The philosophy behind RADAR-CLD is that large “trial ready cohorts of pre-screened individuals (e.g., registries) are not successful and have limited value in aging and diverse cohorts. Their overall goal is to develop a network of collaborative, interdisciplinary professionals to facilitate recruitment, as well as develop a new professional position often absent in clinical trials – a Community Research Liaison (CRL). *Partnered with Recruitment Partners LLC.

Project # 1R24AG065163-01
Funding Year: 2


Project Abstract
Those conducting research in aging need understanding of how to engage with communities as partners to develop research proposals and recruitment strategies that motivate and sustain participants from these groups. Many approaches to recruitment focus on identifying large pools of potential participants and “trial ready cohorts” of pre-screened individuals. These approaches do not yet have established success in aging populations and the platforms used to reach these large numbers may have limited value in aging and diverse cohorts, which depend on trusted sources to make decisions. Our project will develop, evaluate, and document a replicable process for creating the capacity and infrastructure for community-involvement necessary for ensuring enrollment goals of aging studies can be achieved and establishing the approaches by which to do so. Building on the established model for cultivating and leveraging collaborative teams across scientific and non-scientific divides to address issues of equity in specific research areas, this project will develop, evaluate and disseminate a Recruitment Accelerator for Diversity in Aging Research, Cognitive Loss and Dementia (RADAR-CLD) at Mount Sinai and SUNY Upstate. Both the NYC and Syracuse sites have strong community partners and establishing the project in New York City and Syracuse allows an evaluation of the effectiveness of the Community Research Liaison (CRL) and Accelerator model in two distinct communities. The Accelerators will focus on the topic of recruiting and retaining diverse, older adults with or at risk for cognitive loss with application to NIH-funded studies. The project includes workforce development to create a novel professional, the CRL, not previously recognized in clinical trial staffing, who will be uniquely trained to maximize research participation by connecting the community and research partners through the Accelerator activities. The CRL will assemble collaborative teams including community seniors, patients, advocates, caregivers, families, clinicians, funders, public health and advocacy professionals, research teams and industry to be prepared with skills for effective group dynamics by the CRL and may create established networks for recruitment education and outreach. Accelerator meetings around specific NIH-studies will be organized, and Accelerator-recommended, stakeholder-led projects will be supported by RADAR-CLD funds, with outcomes on recruitment, retention and participation diversity documented. Manuals of materials and methods for developing and sustaining the CRL professional and Accelerator infrastructure will be disseminated for implementation at other sites. Documentation of process and establishment of models of cost and time will allow appropriate allocation of budgets toward sustainability of the proposed CRL capacity, Accelerator infrastructure and innovative engagement activities for promoting diverse participation in aging research.

Main Website Features
Website is well designed, simple to navigate, and clear. It is geared exclusive towards researchers seeking to improve recruitment. However, the contact page is very general. It might be useful to include examples of how RADAR-CLD will help and what custom recruitment methods they have employed in the past. Success stories or quotes could be posted on the front page or in its own section.

Notable Highlights
The website for this project has a clean, finished aesthetic that communicates professionalism regarding the team and project. There is not much content on this website, and increased specificity in the projects aims, execution plans, and current progress would be helpful in improving clarity. The main page describes two main components under the broad project aims. It simply describes the creation of an “Accelerator” with a very general description of what that means and includes expected buzz words that many of the other websites also included. Second, they present the development of a Community Research Liaison, which is a unique and very intelligent idea, however given the short description, I’m sure many have additional questions regarding this component. Is this just a CRL for the project? Is it a new role that they teach to researchers seeking recruitment help? Would the CRL be training other CRLs or are they hired out? There is a way to communicate with the team, however this too is very general, with the option to type in a message but with no additional context or options of the type of communication the user is seeking. Overall, additional features (e.g., multiple languages, expanded “Contact” section) and increased specificity on the project and its actual activities would be helpful.

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Recruiting and Retaining Older African Americans into Research (ROAR)

University of Michigan at Ann Arbor
https://www.nia.nih.gov/health/recruiting-older-adults-research-roar-toolkit

The primary goal of this project is to develop and disseminate effective strategies to recruit African American older adults into health-related research. They employ a community advisory board comprised of African American older adults in Detroit, MI. They also manage a participant registry of 1400 older African Americans in Detroit. Another aim is to develop an interactive recruitment website.

Project # 1R24AG065151-01
Funding Year: 2


Project Abstract
The Recruiting and Retaining Older African Americans into Research (ROAR) project is designed to develop and disseminate effective strategies to recruit, retain, and promote participation in health-related research among African American older adults. This project builds upon 20 years of successful efforts to engage and provide health promotion programming for older adult community members in Detroit, MI through the Michigan Center for Urban African American Aging Research (MCUAAAR), a collaborative partnership between The University of Michigan, Wayne State University, and most recently, Michigan State University. At the center of the current MCUAAAR research recruitment infrastructure is a Community Advisory Board of African American older adults, housed at MCUAAAR's Healthier Black Elders Center in Detroit, MI. This advisory board meets regularly to review and provide approval for research applications from investigators who want to sample from a Participant Research Registry of 1400 older African Americans in Detroit who have agreed to be contacted to participate in social science research. The advisory board also provides feedback on MCUAAAR community programming and receives instruction on how to evaluate and interpret social science research. The MCUAAAR team, led by Dr. James Jackson and Dr. Jamie Mitchell, will utilize community-based participatory approaches to significantly expand the recruitment and retention capabilities of the current infrastructure by achieving the following three aims with corresponding methods and outcomes. First, we will engage local community partners in order to recruit, train and establish a research advisory board of African American older adults in Flint, Michigan in service of a future Flint Participant Research Registry. Establishing a research advisory board of African American older adults in Flint, Michigan with the support of new and existing community partnerships, will provide the community-driven infrastructure for building a future research registry of older adults in Flint that investigators can apply to utilize similar to the existing Detroit registry. Next, we will gain input from both the existing Detroit and new Flint community advisory boards and other stakeholders on the technological design, content and user interface, resources for male recruitment, and launch of an interactive recruitment website. This website will feature educational resources for the public on research participation, information on how to join the registries, features of NIH-relevant research utilizing the registries, a section targeting men's research recruitment, and administrative tools and best practices for researchers working with minority older adults. Finally, we will evaluate the reach, usability, and acceptability of the website with a range of older African Americans and academic and clinical researchers in three cities in order to demonstrate the strategy's effectiveness with specific populations and how to establishing a new community- based registry and corresponding resources can be adapted for other settings and geographical areas.

Main Website Features
No evident individual website yet. However, the ROAR toolkit is easily available on the NIH website, and provides a variety of resources including PowerPoints, recruitment flyers, and informational e-workbooks. All resources are available in English, Spanish and Chinese.

Notable Highlights
As stated in Table 1, there was no project-specific website found. However, it was easy to find the ROAR toolkit on the NIH website. Inclusion of an Overview and User Guide was helpful to understand the aims and suggestions proposed by the project. The toolkit also includes PowerPoint presentations (both a long and short version) and Healthy Aging and Research Partipation flyers. All these resources are conveniently already translated into English, Spanish, and Chinese. Though the project aims include the development of a registry, there does not yet seem to be one publicly available. It is also unclear what additional progress has been made in regards to the project’s aims.

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New Jersey Minority Aging Collaborative

Rutgers Biomedical/Health Sciences - RBHS
https://ifh.rutgers.edu/highlight/rutgers-led-collaborative-awarded-3-6m-nih-grant-to-build-infrastructure-for-minority-aging-research/

The primary aim of this project is to support culturally target and linguistically appropriate research for African American, Hispanic, and Asian older adults in their families in New Jersey. They aim to build a community network via the Rutgers Institute for Health and Cooperative Extension research stations.

Project # 1R24AG063729-01
Funding Year: 3


Project Abstract
We propose the New Jersey Minority Aging Collaborative (NJMAC) to improve research recruitment and retention and support culturally targeted and linguistically appropriate research for African American, Hispanic, and Asian older adults and their families. While NJ ranks as the 2nd wealthiest state by per capita income and 12th best in the country for overall health, there is a paradox in considering other population health rankings where New Jersey ranks one of the worst in disparity in health status (46th). For older adults in NJ, there are equally as large disparities when it comes to health and well-being especially among minority older adults, which is exacerbated by a lack of engagement in biomedical and social research. Additionally, there has been inadequate integration of community support necessary to empower minority communities in NJ to be fully engaged in biomedical research. These impediments necessitate further development and implementation of sustainable and equitable partnership among community partners and academic institutions through collaborative development, reciprocal transfer of knowledge, and expertise to improve recruitment and retention among minority older adults. Using an adaptive and reciprocal “collective impact” design, the NJMAC will leverage and build team- science in NJ through Rutgers Institute for Health and Cooperative Extension in partnership with community organizations to foster trust with minority older adults and achieve greater intergration of community needs and research efforts. With a state-wide infrastructure and track record of culturally relevant community-research engagement, we aim to: 1) Build and sustain research capacity among academic and community partners through building a collaborative community steering committee and explore trust between collaborators to fully understand the barriers, challenges, and racial/ethnic and socio-cultural contexts of conducting research in and with African-American, Hispanic, and Asian aging populations across NJ; 2) Engage community members, their families, and partners through culturally targeted and linguistically appropriate reciprocal education, training, and measurements; manage a research repository to understand and document trust and feasibility of research recruitment and retention; 3) Expand, catalyze, and assess team science as a critical platform for collaborative research on aging populations and leverage an iterative platform for process and outcome evaluation among African-American, Hispanic, and Asian populations; and 4) Translate findings and lessons learned through the NJMAC to inform future academic-community partnerships in aging and AD-ADRD research; collaboratively build research resource to advance processes for recruitment/retention in diverse community settings at local and national levels.

Main Website Features
Surprisingly, there is no central website for this project. However, on the Rutgers website, information can be found regarding the project, its researchers, and its community partners.

Notable Highlights
This project also did not have its own website. Surprisingly, a dedicated webpage was also not evidently available. The only information easily found was the grant approval and abstract, and an article on the Rutgers website describing the grant. In fact, when a user goes to click the embedded link from “Rutgers Institute for Health, Health Care Policy, and Aging Research” they are met with a dead link. Given that this project is its third year of funding, it is surprising that there is not far more publicly available to showcase progress.

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Collaborative Approach for Asian Americans and Education (CARE) in Alzheimer’s Disease and Related Dementias

University of California San Francisco
https://careregistry.ucsf.edu/about-care-registry

The primary goal for this project is to address the low enrollment rates for AAPI into dementia research. They have a presence in four sites in California and aim to develop a registry, a concrete recruitment model, foster collaborations across five universities and add to the science of recruiting and retaining minorities in research.

Project # 1R24AG063718-01
Funding Year: 3


Project Abstract
Alzheimer's disease is the fourth leading cause of death in California compared to sixth in the U.S., and the number of Americans living with Alzheimer's Disease and Related Dementias (ADRD) is expected to increase from 5.7 to 14 million by 2050. It is important to ensure that underserved communities, such as Asian Americans and Pacific Islanders (AAPI), are engaged and educated on ADRD as disparities exist in knowledge about ADRD among AAPI and Asian American caregivers experience disparities in depression, burden, and physical health compared to non-Hispanic White caregivers even though AAPI are the most rapidly growing racial group of older Americans at risk for ADRD. Research participation from AAPI are limited and the sparse research suggests that AAPI are interested in being engaged, but that various concerns (e.g. lack of cultural/linguistic information and mistrust) need to be addressed in order to improve participation in ADRD research, including clinical trials participation. To overcome these barriers to ADRD clinical research participation, we will implement culturally appropriate and innovative recruitment strategies from a collaborative team of trusted sources of information (e.g. community partners). The ultimate goal of the proposed project, Collaborative Approach for Asian Americans and Pacific Islanders Research and Education (CARE) in Alzheimer's Disease and Related Dementias, is to address the gap and reduce disparities in ADRD research participation among AAPI through the creation of a registry of AAPI who are interested in participating in various types of ADRD research. CARE will be conducted in five languages (English, Mandarin, Cantonese, Vietnamese, Korean) across four sites in California (San Francisco Bay Area, Sacramento County, Los Angeles County, and Orange County). CARE is critical to ensure that AAPI, an underserved population, are meaningfully included in ADRD research. CARE will accomplish the following: a) Develop a registry that will facilitate future ADRD research with AAPI; b) Serve as a recruitment model for other populations; c) Increase the capacity of AD Centers/Institutes at and develop a new collaborative team across five universities; and d) Develop a robust approach and add to the science of recruiting and retaining minorities in research with the overall goal of reducing ADRD disparities. CARE addresses Goal F.3. of NIA's Strategic Directions for Research on Aging: "develop and implement strategies to increase inclusion of diverse populations in research."

Main Website Features
CARE has a very colorful website with more sections than most of the other websites. While the wider scope may not be as streamlined, it compensates by using an engaging style and gearing the website towards its target demographic and potential participants. The website can be translated into 6 different languages.

Notable Highlights
This CARE website is perhaps the most well-developed of all the available websites, and certainly the most easily accessible for potential participants. It has clearly outlined goals, rationale, and even an FAQ page. There are several ways to enroll in the registry, the most obvious being the “Enroll in CARE” tab at the top of the page. There are plenty of pictures to humanize the endeavor, and stories are included to ensure that the voices of the participants are given a platform from which to be heard. Finally, there is also a CARE registry ambassador program, so that interested parties can become ambassadors in their communities to assist with the project’s goals. The website can be easily translated into 6 different languages, which is a very evident way to demonstrate that they are following through with their stated goals and beliefs.

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Building Trust to Enhance Diversity in Aging Research

University of Maryland Baltimore
https://www.pharmacy.umaryland.edu/programs/the-patients-program/what-we-do/nia-r24-building-trust-to-enhance-diversity-in-aging-research/

The primary aim for this project is to foster a community-academic collaborative that will promote trust among a diverse population of older adults in order to increase recruitment rates. It appears that project goals are two-fold: to study best-practices for recruitment and to develop a registry to recruit three broad demographics: older African Americans, older adults with impairments, and older adults who are homebound.

Project # 1R24AG063728-01
Funding Year: 3


Project Abstract
Aging Research focuses on aging processes, age-related diseases, and special problems and needs of older adults. Aging Research helps us to understand the nature of aging and how best to extend the healthy, active years of life. Greater diversity among the populations engaged in Aging Research studies is essential in order to understand the complex relationships among health status and age, race, physical functioning (and physical impairment), culture, and socioeconomic status. The proposed project will foster a community-academic Aging Research collaborative that promotes trust and develops recruitment and retention methods to increase the diversity of older adult participants in clinical studies of aging Achieving greater diversity in clinical research study populations involving older adults is desirable and feasible, yet comes at a cost. Our proposed study of recruitment methods will help answer the question, “Can we identify evidenced-based recruitment methods that are both effective (successfully recruit populations underrepresented in clinical research) and efficient (provide a reasonable return on investment) in recruiting and retaining underrepresented populations in clinical studies of aging?” We will accomplish this by building the infrastructure necessary to support methodological research in partnership with community organizations with whom we have worked on prior multiyear federal grants, including an R24 from the U.S. Department of Health and Human Services' Agency for Healthcare Research and Quality (AHRQ). The project aims are: Aim 1: Foster a community-academic Aging Research collaborative that promotes trust and develops recruitment and retention methods to increase the diversity of older adult participants in clinical studies of aging Aim 2: Engage diverse older adults, their community-based health care providers, and investigators in a manner that facilitates bi-directional learning for future Aging Research studies Aim 2a: Move older adults along the willingness to participate in research continuum Aim 2b: Enhance the cultural competence of investigators studying aging and by doing so promote trustworthiness of Aging Research studies by community members Aim 3: Guided by co-developed ethical principles, facilitate the enrollment of three difficult-to- recruit subpopulations: older African Americans, older adults with impairments (hearing, vision, mobility), and those who are homebound into a Registry.

Main Website Features
Though no central website was found during the search, there is a webpage on the University of Maryland School of Pharmacy’s website that describes the initiative, aims, and project team.

Notable Highlights
Though no central website was found during the search, there is a webpage on the University of Maryland School of Pharmacy’s website that describes the initiative, aims, and project team. Notably, at the bottom of the webpage, there is a section with links to the latest updates on the R24 initiative. Though each of these Project Updates are fairly general, it is an appreciated effort to demonstrate what they are doing and an example that other projects could use and expand upon.

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Engagement in Longevity and Medicine (ELM)

New York University School of Medicine
https://www.pharmacy.umaryland.edu/programs/the-patients-program/what-we-do/nia-r24-building-trust-to-enhance-diversity-in-aging-research/

This program’s primary goal is to harness the existing resources of NYU Langone Health to establish a centralized research infrastructure to advance community engagement, recruitment and retention of older adults for aging and dementia research. Similar to other projects, this NYC based program aims to understanding best-practices, and analyze and evaluate successful strategies, provide training programs for research teams, and develop a research registry of potential participants.

Project # 1R24AG063725-01
Funding Year: 3


Project Abstract
The goal of this project is to establish a centralized research infrastructure that harnesses New York University (NYU) Langone Health’s clinical and community partnerships throughout New York City to strengthen and advance the science of community engagement, recruitment and retention in aging and Alzheimer’s and related dementia (ADRD) research. Despite the tremendous growth in the older adult and elderly population, particularly among racial and ethnic minorities, these individuals are underrepresented in clinical research. Older age participants face challenges that differ from younger age populations in engagement, recruitment and retention in human subjects research. These include concerns about chronic disease complexities, mobility limitations, and cognitive and sensory impairments that may limit access to research opportunities or capacity to consent. As a result, the evidence of what works in healthcare interventions is less generalizable to older populations, particularly for minority and low-income communities despite the recognition of the disproportionate burden of health disparities among these communities. To address these concerns, the NYU Engagement in Longevity and Medicine (ELM) Research Collaborative will evaluate and disseminate best practices in engaging, recruiting and retaining older populations, stimulate the development and testing of innovative community-engaged and technology-based approaches to participant recruitment in clinical and community settings, and strengthen communication and messaging strategies tailored to diverse aging research populations that are inclusive of ADRD communities and representative of the National Institute on Aging’s priority populations. To increase engagement, recruitment, and retention of older age subjects into aging and ADRD research, the NYU ELM Research Collaborative will: 1) establish a centralized infrastructure including community members, clinical researchers, and patient and family stakeholders in aging and ADRD research; 2) analyze and evaluate what is currently known about successful strategies and challenges in recruitment and retention; 3) develop innovative approaches for education and engagement using electronic health record systems and community navigators rooted in the community health worker model; 4) build and deploy a novel training program for research teams using simulation with actors as potential subjects; and 5) develop a broad-based research registry of interested potential subjects reflective of the diversity of the older adult US population. This study will provide immediate benefit to ongoing aging and ADRD clinical trials and substantial support to future trials. 

Notable Highlights
This project has no central website and does not have a specific webpage dedicated to describing is methods and any milestone achievements. If a webpage or website does exist, it is extremely inaccessible.

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Workforce Development Engages Diverse Older Adults to Catalyze Innovative Approaches for Enhanced Recruitment and Retention

University of Colorado Denver

The primary aim of this project is to increase recruitment and retention of older adults in Colorado by hiring and training diverse older adult to paid positions as Engagement Specialists and Informed Consent Specialists. Once trained, these specialists would be hired by clinical research teams and use their understanding to inform community engagement and increase recruitment.

Project # 1R24AG071459-01
Funding Year: 1


Project Abstract
The University of Colorado Medical Campus (AMC) has struggled to address adequately the ethical and scientific imperative of policy. Among AMC adult clinical trials, only 25% (n=498) enrolled even one subject over age 50 in Colorado during 2019. Hispanics were significantly underrepresented (5% of enrolled v. 22% of the state's population). Data by age strata show a noticeable drop in the number of participants 75+ -- the fastest growing age group in Colorado. We are failing to successfully recruit important segments of our state population to clinical trials. Further, only 4% of staff who do recruiting/ consenting for clinical trials at AMC are 60+. We have a major age-related disparity between those doing recruitment and those we need to recruit. We propose Research centralized to narrow this age gap by training and hiring diverse older adults to fulfill new paid positions as Engagement Specialists (RESs) and Informed Consent Specialists (ICSs) who will be part of our research support services. We will utilize well-established training infrastructure and adapt existing curricula, available through project partners, to prepare 45 diverse older adults in Years 1-3 for these new roles (Aim 1). Training will be rigorous, engaging cohorts of 15 diverse older adults in 6 months of immersive learning, including didactic and experiential, in-person and online/virtual components. Through team-based projects (a required component of training), diverse older adults will catalyze the development of new resources to support recruitment/retention. Once trained, RESs/ICSs will be hired by clinical research support centers/teams with extensive clinical trial networks across AMC and affiliated healthcare systems. RESs/ICSs will use their nuanced understanding of different populations to inform community outreach/engagement and address these considerations appropriately to facilitate informed consent. In Years 2 and 3, we will organize “Research Roadshows” to bring research and research teams to diverse older adults throughout Colorado; we will travel to 8 geographically distinct rural/frontier communities, each with a unique geo-political history, cultural milieu, and racial/ethnic composition (Aim 2). Our goal is to reach 2000 individuals. We will sustain engagement through multiple communication strategies that infuse messages/language and other products created by RESs/ICSs. These include novel approaches will increase both the percentage of AMC clinical trials that diverse older adults, and the percentage of diverse older adults in clinical trials.

Main Website Features
No central website found (project is in its first year of funding).

Notable Highlights
Though this project does not yet have a centralized website, it does present a very unique approach to recruitment through the use trained and employable older adults who understand how to approach their own demographic for recruitment into research. It was challenging to find any information on the project outside of the RePORTER website where it is listed. Since this project effectively began in October, there will likely be updates in the coming months. Though this project takes a far more time intensive approach than some others, it is unique and may prove cost effective in the long-term to develop a network made up of specially trained people, as opposed to a digital network.

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The COEQUAL Registry: Creating Opportunities to Increase Health Equity and Equality for Persons at Risk for Alzheimer Disease and Related Dementias

Washington University

The primary aim of this study is to establish a new approach to recruiting, enrolling, and retaining participants in ADRD research by using a community engagement framework and developing a “culturally appropriate” research registry for the St. Louis area.

Project # 1R24AG074915-01
Funding Year: 1


Project Abstract
As our population ages, the global crisis related to Alzheimer disease (AD) and related dementias (ADRD) increases and yet provides the opportunity for the development of research strategies that support the needs of our aging community. In Missouri, the projected total number of people 65 and older living with ADRD will increase from 120,000 in 2020 to 130,000 by 2025. Health disparities in ADRD begin with acknowledging the impact of social determinants of health, structural vulnerability, and systematic discrimination. Ethnoracial factors, classism, systemic and systematic racism, ageism, historical mistrust of scientists, and suspicion of the healthcare system all are factors linked to reduced recruitment, enrollment, and retention in ADRD research. The main objective of this study is to establish a novel approach to recruiting, enrolling, and retaining under- resourced communities into an ADRD research registry named COEQUAL (Creating Opportunities to Increase Health Equity and Equality for Persons at Risk for Alzheimer Disease and Related Dementias). We propose using a community and patient engaged research framework (CPER) to develop and test the feasibility of a high- yield recruitment process to create a research registry for recruitment, enrollment, and retention of under- resourced participants into ADRD research. The study team consists of diverse researchers, community members, and family and patient advocates partnered with Washington University School of Medicine Knight Alzheimer’s Disease Research Center (Knight ADRC) in St. Louis, Missouri. We hypothesize that the creation of a culturally appropriate research registry will aid in the recruitment, enrollment, and retention of diverse participants into ADRD research, as well as those who are more representative of the medical comorbidities experienced by community-living older adults. The Specific Aims are to: 1. Identify and enhance current practices and resources to promote high-yield recruitment, enrollment, and retention of underrepresented participants into ADRD research. 2. Determine if NIA ADORE (Alzheimer's & Dementia Outreach, Recruitment & Engagement Resources) materials are accurate, accessible, and actionable for meeting best practices to increase recruitment, enrollment, and retention for under-resourced participants in ADRD research. 3. Establish and implement the COEQUAL research registry in the St. Louis area to increase the recruitment, enrollment, and retention of n=2000 under-resourced participants who are cognitively unimpaired and impaired into ADRD research. This study provides a systematic process for the enrollment of under-resourced participants into ADRD studies. Our goal is to build a sustainable research registry that expands the existing success and efforts of the Knight ADRC to increase diversity, equity, and inclusion in ADRD research.

Main Website Features
Website not yet developed

Notable Highlights
Although the project does not yet have a centralized website, the PI, Dr. Balls-Berry, is a very grounded, intelligent, and engaging person who aims to work closely with civic leaders to make sure work benefits communities, instead of just resulting in “papers and promotions.” With strong leadership, and a focus on underrepresented demographics, particularly Black participants, this project appears to be a good one to follow as it progresses.

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Building Community and Research Engagement among Sexual and Gender Minority Older Adults at Risk for Alzheimer’s Disease and Related Dementias

Emory University

The goals of this project are to develop and maintain a national network of existing sexual and gender minority (SGM) organizations to engage SGM people with ADRD in clinical research, establish a research registry for SGM people with ADRD, and develop a replicable model for recruiting and retaining SGM people with ADRD and SGM caregivers.

Funding Year: 1


Project Abstract
By 2030, there will be nearly six million sexual and gender minority (SGM) older adults aged 50 and older in the U.S. who identify as lesbian, gay, bisexual, transgender, and/or queer. This number will more than double by 2050. Approximately 350,000 SGM older adults in the U.S. currently are living with Alzheimer's disease and related dementias (ADRD), with projections nearing one million by 2030. SGM older adults experience greater health disparities than their heterosexual counterparts. Several recent studies have shown a higher prevalence of risk factors for ADRD, including higher rates of cardiovascular disease, hypertension, diabetes, depression or frequent mental distress, and subjective cognitive decline. In addition, SGM older adults are less likely to have informal caregiving support and for those with caregivers, their caregivers often lack access to inclusive services and resources. Research participation from SGM older adults is extremely limited and the sparse research suggests that SGM older adults are interested in being engaged in research but concerns regarding the lack of inclusive services and mistrust need to be addressed to improve participation in ADRD research, including clinical trials and intervention research studies. To overcome these barriers to participation in ADRD- related research, this study will implement culturally appropriate and inclusive recruitment strategies aimed at engaging, recruiting, and retaining SGM older adults with ADRD and SGM caregivers in research. This will be accomplished through (1) the development of a national network of existing SGM organizations, programs, and academic institutions to engage SGM people with ADRD and SGM ADRD caregivers in clinical research; 2) establishing a sustainable research registry of SGM people with ADRD and SGM caregivers by developing, implementing, and evaluating tailored recruitment and engagement programs, for use by ADRD and clinical research institutions; and 3) the development of a replicable model for recruitment and retention of SGM people with ADRD and SGM caregivers in ADRD and aging-related research. Our collaborative team will address the National Institute of Aging's Strategic Directions for Research on Aging “F-3: Develop and implement strategies to increase inclusion of diverse populations in research.”

Main Website Features
No website yet, although it may be helpful to monitor the Wharton lab website for updates.

Notable Highlights
This study is one of the few to specifically address recruitment concerns for the lesbian, gay, bisexual, transgender, and/or queer (LGBTQ) community with Alzheimer’s and dementia risk. By developing and maintaining a national network of existing sexual and gender minority (SGM) organizations, the researchers aim to establish a sustainable research registry. The study is very new, and although the Wharton lab does have a website, it does not appear to have included this study at the time of this writing.

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Tailoring Recruitment Communication using Virtual Human Technology to Increase Participation of Older Minority Adults in Clinical Trials

University of Florida
https://www.jou.ufl.edu/2021/09/22/janice-krieger-receives-2-1-million-grant-to-use-virtual-human-technology-to-promote-clinical-trial-participation-among-older-adult-minorities/

The project’s long-term goal is increase clinical trial participation among older adult minorities, using Virtual Human Technology. They aim to redesign a virtual health assistant called ALEX (Agent Leveraging Empathy for eXams) to be culturally senstivie to minorities. In Aim 2, they will track engagement, and in Aim 3, they will compare ALEX with standard recruitment methods.

Project # 1R24AG074867-01
Funding Year: 1


Project Abstract
Older adult minorities are an underserved population, who are at a particularly high risk for developing chronic diseases/health conditions and are significantly underrepresented in clinical research. Well-known barriers, including research-related mistrust (e.g., belief that participants lack choice, mistrust of white researchers), lack of cultural diversity/sensitivity among CT staff, and the exclusion of decisional support providers in decision- making impede older adult minority participation in CTs. Tailoring content and source preferences to be patient- centered, culturally sensitive (i.e., promote feelings of comfort, trust, respect), and personally relevant to the receiver (a patient), thus increasing the likelihood of having a lasting effect on their attitudes and behaviors, has been linked to positive health behaviors by older adult minorities. Such tailoring has not been studied to increase participation rates of older adult minorities into active CTs, though culturally tailored VHT interventions are perceived as trustworthy among minority participants. Our long-term goal is to increase clinical trial (CT) participation among older adult minorities (Black/African American (AA), Hispanic/Latinx (H/L), and/or rural adults over the age of 50) using Virtual Human Technology (VHT). In Aim1, we will conduct focus groups with older adult minorities to obtain data that will be used to redesign ALEX to be culturally sensitive for these minorities. In Aim 2, track engagement of such minorities into active, NIH-funded CTs across different modalities for remotely delivering ALEX. In Aim 3, we will compare ALEX and standard recruitment methods for enrolling such minorities into NIH-funded CTs. Achievement of these project aims will result in adaptable, minimally tailored VHT recruitment intervention for increasing older adult minority participation rates in active NIH-funded CTs.

Main Website Features
No website for this particular study, however the website for ALEX is very clean and includes easy to follow sections, engaging images, and many links to resources. Website is part of the University of Florida website.

Notable Highlights
The presented abstract makes an error in its lack of explaining what ALEX actually is, for those who do not know. Explaining the acronyms used is elementary for clarity. Nonetheless, ALEX is an interesting concept. The application uses “demographically matched virtual humans” to educate patients about their colorectal cancer risk. Although on first glance, the imagery may appear somewhat contrived, it does represent a very practical application of the research that describes the clinical utility of racial concordance between the patient and physician. The website for ALEX, includes pilot data on its utility and it appears to be a very promising application of virtual assistance.

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The Collaborative for Aging Research and Engagement (CARE)

​​Indiana University Purdue; University at Indianapolis

The primary goal is to design, develop, and test a dynamic multimedia platform called the Collaborative for Aging Research and Engagement (CARE) Platform that is based on their interdisciplinary partnership with the Alzheimer’s Association, the Alzheimer’s Association Greater Indiana Chapter, the Indiana Alzheimer Disease Research Center, and the IADRC’s Community Advisory Board.

Funding Year: 1


Project Abstract
The goal of proposed project is to design, develop, and test a dynamic multimedia platform called the Collaborative for Aging Research and Engagement (CARE) Platform that is based our interdisciplinary partnership with the Alzheimer’s Association, the Alzheimer’s Association Greater Indiana Chapter (AAGIC), the Indiana Alzheimer Disease Research Center (IADRC), and the IADRC’s Community Advisory Board (CAB). Our partnership is guided by the National Institute of Aging (NIA)’s National Strategy for Recruitment and Participation in Alzheimer’s and Related Dementias Clinical Research1 and will facilitate active engagement of African Americans aged 45 years and older to participate in an Alzheimer Disease and related dementia (ADRD) statewide and national registries. The proposed research addresses 3 goals within 7 strategic priority areas within the NIA’s plan. Our approach focuses on principles of community based participatory research approach and the user centered design process to engage and educate African Americans aged 45 and older to participate in clinical Alzheimer’s disease and related dementia (ADRD) studies. As our community partner, the Alzheimer’s Association (AA) is equally committed to advancing research and improving recruitment to help researchers find a prevention strategy or disease modifying treatment for ADRD. Our primary focus is to engage healthy older adults and not people diagnosed with dementia as we need large numbers of healthy and younger adults to participate in research to meet the ambitious goal of finding a prevention or cure by 2025, thus the need for a registry of adults willing to participate in aging research in general. Additionally, this project will develop culturally relevant content to educate African Americans aged 45 and older about brain health and ADRD. Facilitated by collaborative networks through IADRC and AAGIC, the long-term goal is to apply the evidence from the CARE Platform to serve as an exemplar for increasing brain health and ADRD health literacy and intention to enroll in ADRD clinical studies among African Americans at the regional and national level.

Main Website Features
No website found (project is very new). News piece here.

Notable Highlights
No website found for this project yet and minimal information found on the internet.

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Summary

The 15 projects found described in this report were all funded by the NIH grant PAR-18-749 titled “Examining Diversity, Recruitment, and Retention in Aging Research.” The projects had different aims, such as targeting a specific under-recruited demographic, but took similar approaches. Many of them aimed to develop registries, establish interdisciplinary teams, foster community collaborations, and increase health literacy for their target populations. Fewer than expected had finished websites or webpages. Notable inclusions were the ability to translate the websites into several languages, stories and videos directed at both participants and researchers to describe resources and goals, regular project updates, and detailed descriptions of the products available and those under development. 

Because many of these projects are early stages, many of their aims have not yet been achieved (e.g., many do not yet have websites or developed registries). It was surprising to see these multi-million-dollar grants provided to projects that have yet to establish a developed internet presence. Though money is predominantly used to develop infrastructure and pay researchers and collaborators, it would seem natural to provide ongoing updates to the public, especially since these projects are about community engagement, developing trust, and increasing recruitment. Overall, much can be learned by how these different projects are using their funds, and several appear to be reaching apparent success milestones.

Best Website for Researchers

The Engaging Communities of Hispanics for Aging Research Network (ECHAR)

MOST INNOVATIVE USE OF TECHNOLOGY

Tailoring Recruitment Communication using Virtual Human Technology to Increase Participation of Older Minority Adults in Clinical Trials

MOST INNOVATIVE USE OF PERSONNEL

Workforce Development Engages Diverse Older Adults to Catalyze Innovative Approaches for Enhanced Recruitment and Retention

BEST WEBSITE OVERALL – RESEARCHERS AND PARTICIPANTS

Collaborative Approach for Asian Americans and Education (CARE) in Alzheimer’s Disease and Related Dementias

Written by: Richard E Chunga
Report commissioned by: Recruitment Partners, LLC
9/25/2021
Updated: 12/30/2021

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