To Improve Diversity In Alzheimer's Studies, Researchers Try Outreach : Shots - Health News Black and Hispanic people often don't volunteer for studies of Alzheimer's disease, despite their risks for developing it. Researchers are working to make studies more inclusive, but it's not easy.
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Scientists Reach Out To Minority Communities To Diversify Alzheimer's Studies

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Scientists Reach Out To Minority Communities To Diversify Alzheimer's Studies

Scientists Reach Out To Minority Communities To Diversify Alzheimer's Studies

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ARI SHAPIRO, HOST:

Black and Hispanic Americans are especially vulnerable to Alzheimer's, but these groups are often underrepresented in scientific studies of the disease. NPR's Jon Hamilton says scientists are trying new ways to diversify their research.

JON HAMILTON, BYLINE: Scientists often look for study volunteers at clinics or medical centers. But a team from Case Western Reserve University in Cleveland is trying something different. On this Sunday morning, they've come to a fundraising walk organized by the local chapter of the Alzheimer's Association.

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STEPHANIE HOWSE: Well, good morning, everybody. How's everybody doing?

HAMILTON: Before the walk begins, the crowd gets a pep talk from Representative Stephanie Howes. She's African American. She also takes care of her mother, who has dementia.

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HOWSE: Some days have been hard, right? Yeah, right? But there are - we've been having a lot of great days, a lot of good memories.

HAMILTON: A diverse crowd of about 4,000 people have shown up, and the ones who stop by the vendor tables are likely to meet Leah Cummings, one of two research associates from the medical school at Case Western.

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LEAH CUMMINGS: So we're looking for families, minorities and people with early-onset. It's a genetic study.

HAMILTON: Cummings explains that the goal is to find genes that contribute to memory loss, especially genes that might be different in African Americans and Hispanics.

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CUMMINGS: And this gives you some more information about our study.

UNIDENTIFIED PERSON #1: OK.

CUMMINGS: It gives you all the details that you're going to need.

UNIDENTIFIED PERSON #1: OK.

CUMMINGS: And then feel free to take anything else that you - OK.

UNIDENTIFIED PERSON #1: All right. Thank you.

HAMILTON: Cummings says despite the big crowd, the study is a tough sell.

CUMMINGS: So far, no one has signed up. But we're hoping that we'll get a few names today.

HAMILTON: The recruiting effort in Cleveland is part of a nationwide strategy funded by the National Institute on Aging. Jonathan Haines, a professor at Case Western, says diversifying research studies is the best way to answer some outstanding questions about race, ethnicity and Alzheimer's.

JONATHAN HAINES: Historically, we have not been looking at a lot of the diverse populations. And so there's some evidence that it's different in different populations, but there's a lot that we still need to learn.

HAMILTON: So Haines and other researchers are asking minority communities for help.

HAINES: We actually need to have thousands and thousands of individuals participate in these studies to really understand the genetics of Alzheimer's disease.

HAMILTON: The university is trying to make it easy to participate. People who sign up can even ask to have a researcher visit their home to collect blood samples and health information. But Haines says in minority communities, it's about more than convenience.

HAINES: One of the concerns that we often deal with is an issue of trust.

HAMILTON: Trust in doctors and medical institutions and the good intentions of researchers - that often requires building a relationship. And Haines says talking to people at an Alzheimer's walk is one way to start.

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UNIDENTIFIED PERSON #2: In five, four, three, two, one - let's walk.

(SOUNDBITE OF AMERICAN AUTHORS SONG, "BEST DAY OF MY LIFE")

HAMILTON: Today's walkers include many African Americans. One is Robert Smith, whose aunt has Alzheimer's.

ROBERT SMITH: I've been up since 2:30 this morning, and I ran over here to make sure I made the event.

HAMILTON: Smith says he's no fan of doctor visits but would consider signing up for an Alzheimer's study.

SMITH: Yeah, absolutely. If it may help find a cure, I'm all for it.

HAMILTON: Rosita Brantley has a grandfather who died with Alzheimer's. And Brantley works in the dementia unit of a retirement home, so I ask if she's interested in joining the genetic study at Case Western.

ROSITA BRANTLEY: Well, yes, because I would want to know if it's genetic, you know, if it's in my genes, you know, will it be passed down? Yeah, I would do it if I was asked. Yeah.

HAMILTON: Case Western researchers were able to sign up four people for their study before the walk was over.

Jon Hamilton, NPR News.

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