Making Alzheimer’s Research More Accessible and Inclusive, With Jessica Langbaum, Ph.D.

Jessica Langbaum, Ph.D.

Credit: NeurologyLive

Clinical trials are essential for advancing Alzheimer’s disease research, yet finding enough participants remains a major hurdle. Jessica Langbaum, Ph.D., senior director of research strategy at Banner Alzheimer’s Institute and co-director of the Alzheimer’s Prevention Initiative, explains why recruitment is so challenging, how registries like the Alzheimer’s Prevention Registry connect people with opportunities and why it’s vital to include diverse communities in dementia studies. She also shares practical advice for anyone considering joining a trial.

Why is recruiting enough participants such a big challenge in dementia research?

Jessica Langbaum, Ph.D.: Research studies require participants to meet very specific eligibility criteria, such as being in a certain age range, having (or not having) certain medical conditions or scoring in certain range on a test score. And of course, participants must be able to comply with all the study procedures, have a study participant who can answer questions — the list goes on and on. It can be like finding a needle in a haystack at times. This is why researchers must cast a wide net to find participants who meet a study’s specific eligibility criteria.

How do registries like the Alzheimer’s Prevention Registry help connect people with relevant studies?

JL: The Alzheimer’s Prevention Registry is like a research matchmaking service. We notify members of study opportunities taking place near them (or online) and leave it to the member to decide whether to learn more about that opportunity. Registry members are never obligated to pursue a study opportunity we send to them.

Why is it so important to include people from minority and underserved communities in dementia research?

JL: Routinely, dementia studies are criticized for not enrolling participants who are representative of the population likely to develop the disease or who are living with the disease, thereby limiting the generalizability of the findings. Certain communities are at greater risk for Alzheimer’s disease and related disorders and have a higher prevalence than other communities, this includes Hispanic/Latino, Black/African American and Native American communities. Representative enrollment increases the scientific validity of the results and ensures that the findings can have the greatest impact on the health of everyone.

What strategies are working to make trial participation more inclusive and accessible?

JL: This is a multipronged approach, as there is no one solution. Here are just a few examples. We must make sure that our outreach materials reach broad communities and use messaging that resonates with different communities. We must make it easy for people to learn about trial opportunities. We need to make participating in a trial easier, such as offering “decentralized” trials that allow participants to do study procedures from their home or a nearby convenient location, rather than having to travel to a medical center that is only open Monday through Friday, 8 a.m. to 5 p.m. We must make it easier for study partners who live in a different city or state from the participant. We need to fairly compensate people for their time participating in a study; some people must take off work or have caregiving responsibilities. We need to have a workforce who can administer trial assessments and questionnaires in the participants’ language.

What advice do you give people who are thinking about joining a dementia clinical trial but feel unsure?

JL: Talk to the study team and ask them questions. They are your best source of information. In addition, you can read information on trusted websites. The National Institutes of Health, Alzheimer’s Association and programs such as the Alzheimer’s Prevention Registry provide credible, accurate information. Lastly, you can speak with your medical provider and/or friend or family member who has participated in a dementia clinical trial.

If someone wants to join a registry today, what’s the first step?

JL: Joining a registry is quick! Just visit the Alzheimer’s Prevention Registry website and fill out the form. We ask for information like your name, year of birth and where you live. It is that easy.

Anything else you’d like our patient audience to know?

JL: If there isn’t a study that is a good match for you today, that can change in a matter of days. New studies are being launched all the time. Joining a program like the Alzheimer’s Prevention Registry is one of the easiest ways to stay informed and be connected when new studies become available.