A trial for an Alzheimer’s disease drug is recruiting in Aurora to try to diversify its participant pool, but it’s only a first step toward fixing the problem of studies that don’t represent the whole population.
Choosing to set up trials in an area with a diverse population isn’t necessarily a bad idea, but it’s not guaranteed to bring in a representative group of patients, said Dr. Jonathan Jackson, assistant professor of neurology and executive director of Massachusetts General Hospital’s CARE Research Center.
People who participate in drug trials aren’t only disproportionately white, but they’re more likely than the general population to be male, cisgender, wealthy and highly educated — meaning that a drug that works for them may not do much for women or people without the same advantages, he said. “Race and ethnicity is really a great way to see that lack of generalizability,” he said. “It’s not just white people, it’s white people with master’s degrees who live in urban areas on the East Coast or West Coast.”
Green said Care Access is working to reduce the amount of time they ask people to give at the beginning of a study, to make it easier to participate. For example, for the Alzheimer’s prevention trial, they do the initial cognitive screening over the phone to weed out people who already have memory problems before asking potential participants to come in for a blood draw and possibly additional tests, she said.Of course, there are limits to how convenient participation can be.
The amount of pigment in someone’s skin isn’t going to control how well they respond to a drug, but it can be a proxy for the different environments that people live in, Jackson said. Also, some gene variants that might affect drug metabolism are more common in people whose ancestors came from certain parts of the world — though a person who thinks of themselves as African-American could have genes typically seen in European populations, or vice versa.
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