The big issue in medical research, especially in studies about Alzheimer’s Disease and Related Disorders (ADRD), is that not enough people from different racial and ethnic groups are taking part in these studies. Alarmingly, participation rates for Hispanic and African American individuals in Alzheimer’s Disease (AD) trials are notably low, with less than 1% and only 2% representation respectively. This is a problem because these groups make up a much larger part of the population. Usually, no more than 5% of the people in clinical trials come from various racial and ethnic backgrounds, and this problem is even worse in studies run by companies compared to those funded by the National Institutes of Health (NIH) in the U.S., which show somewhat better diversity.
This lack of diversity not only challenges the validity of trial results but also brings up ethical questions regarding fair access to new and potentially effective treatments. Members of underrepresented groups diagnosed with AD often have lower chances of being prescribed approved medications. Additionally, the practice of merely adjusting for ethnic and racial factors in statistical analyses without providing results for specific groups complicates the understanding of how these factors affect treatment outcomes.
Ignoring the unique responses to treatment that different racial and ethnic groups might have can hide important differences in how effective a drug is. This could be because of various biological responses, how likely people are to stick with the study, and how well they follow their medication plans. For instance, a study that looked at brain scans to understand mild memory problems showed that when you take into account people dropping out of the study, fewer areas of the brain seemed to be affected, showing that ignoring such factors could lead to misleading conclusions.
Efforts to include more diverse groups in studies have used new technology to track how diseases progress and to attract a wider range of participants. However, it’s not clear if these high-tech approaches make people from different racial and ethnic backgrounds more willing to join these studies. There’s also a concern that people might not want to join studies that require a lot of internet use and webcams, which means researchers need to think of ways to encourage more people to take part from the start.
To address these disparities, researchers have to work hard to get more African Americans and people from other underrepresented groups to join and stay in studies. This is a big challenge, but it’s crucial for making sure the results of these studies help everyone. Despite these hurdles, there’s a strong advocacy within the research community for enhancing recruitment strategies to ensure the inclusion of a broader range of ethnic and racial groups in ADRD clinical trials.
Improving how we invite people to join studies and making sure we include people from all backgrounds will not only make the research more reliable but also help us understand how treatments might work differently for people from different racial and ethnic groups. Recent initiatives by the National Institute on Aging and the Alzheimer’s Association to develop a national strategy focusing on improving recruitment and retention in clinical studies highlight the critical need to involve diverse and local communities in this research.
Sources: Perspectives on ethnic and racial disparities in Alzheimer’s disease and related
dementias: Update and areas of immediate need, G.M. Babulal et al. / Alzheimer’s & Dementia –
(2018)
