New tool aims to increase enrollment in trials for Alzheimer's disease, other dementias
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The online tool Outreach Pro was launched at the Alzheimer’s Association International Conference to raise awareness of clinical trials for Alzheimer’s disease and other dementias, specifically in “traditionally underrepresented communities.”
In addition to the launch of Outreach Pro, additional findings related to improving diversity in AD and dementia clinical trials included the following:
People are most inclined to participate in a clinical trial if they are invited to do so (85%), are interested in contributing to the aims of the research (83%) or have a family member impacted by the disease (74%);
Black, Latino and American Indian respondents are considerably more likely to participate if someone of the same race asks them and are more concerned than white people about the trial’s impact on work and family responsibilities and the availability of transportation and childcare; and
Exclusion criteria frequently used in AD clinical trials have the potential to disproportionately impact Black and Hispanic/Latino participants, which may have a role in their decreased enrollment in research.
“There is a well-recognized need for diversity in clinical trial populations to ensure diagnostics and treatments are safe and effective for everyone,” Carl V. Hill, MPH, PhD, chief diversity, equity and inclusion officer of the Alzheimer’s Association, said in a press release. “It’s imperative that the [AD] community is aware of the impact of historical racism and also the current racial discrimination in health care that presents obstacles for inclusive participation in [AD] trials. ... Just as important, it is critical that we evaluate strategies that have been shown to be effective when recruiting historically underrepresented individuals and communities in these vital [AD] research studies.”
The National Institute on Aging launched Outreach Pro to raise awareness of AD and dementia clinical trials and to increase participation, according to the press release. The tool enables a variety of health care professionals — including researchers, clinicians, clinical trial administrators and staff — to create and customize outreach materials such as websites, handouts, videos and social media posts with a focus on reaching communities that are usually underrepresented.
The templates included in Outreach Pro allow researchers and clinicians to create materials for outreach from templates that are meant to educate people about AD and dementia; increase overall awareness of AD clinical trials; and offer information about a specific clinical study in AD or dementia that is openly recruiting patients, according to the press release. The templates can be customized through a main library that includes messages, headlines, photos and text that were “extensively tested,” including in groups that represented “diverse and underserved populations.”
Materials created specifically for Black and Hispanic/Latino patients are available in the current Outreach Pro library, according to the press release, and are available in English as well as Spanish. These materials included at launch are leave-behind brochures and fact sheets, online libraries of photos/images, videos, social media posts and motion graphics, according to the press release. Researchers have begun working to add materials for Asian Americans and Pacific Islanders in multiple languages by fall 2021 and for American Indian and Alaska Natives groups by 2022.
“It is critical that clinical trials have appropriate representation to ensure that we have a complete understanding of how well different therapies or approaches to dementia care work in different populations,” Holly Massett, PhD, senior advisor on clinical research recruitment and engagement at the National Institute on Aging, who oversees the implementation of the national strategy, said in the press release. “Outreach Pro was designed to provide well-tested and culturally appropriate outreach materials that resonate with diverse populations and encourage them to participate in clinical trials.”
Reference:
Alzheimer’s Association. Addressing diversity in Alzheimer’s clinical trials. Available at: https://www.alz.org/aaic/releases_2021/clinical-trial-diversity.asp. Accessed July 30, 2021.
Perspective
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Christopher Weber, PhD
There has been a lot of talk about how it is such a challenge to enroll people in AD trials that are representative of many different groups, including people from all ethnic and racial backgrounds. It has been a challenge. As an industry, we must do better.
It has been a part of lot of the discussion here at the Alzheimer’s Association International Conference when we talk about where were going with biomarkers, with much of the science that we are sharing right now. Diversity and representation always seem to be part of the conversation in a very positive, forward-looking way.
We need to think about what sites are enrolling patients and where these sites are. One of the other important parts of clinical trial enrollment is the relationship that the doctors have with their patients and the communities where they would potentially be enrolling patients. Without a relationship, it is hard to make that connection.
There has been a lot of mistrust when it comes to underrepresentation populations. This leads into even bigger issues about having health care that is available to everyone, to be sure that they have a doctor to talk to when they have a memory complaint. That goes back to the early and accurate diagnosis that is important in all of this. Sometimes you can get that by enrolling in a clinical trial or by talking to your doctor. Being able to speak that language and have that relationship with the potential participants in your community is very, very important.
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