Trump Administration Cancels 15-Year Alzheimer’s Study, Leaving Participants Without Promised Results

The study, called Phresh, began as an examination of food deserts and evolved into a broad collection of data on the life course, wellbeing and cognitive health of two aging neighborhoods a few miles from the University of Pittsburgh, a major Alzheimer’s research hub. Roderick Blair, a 70-year-old retired emergency preparedness worker who spent his career on Capitol Hill, was recruited after researchers appeared at his doorstep in Pittsburgh’s Homewood neighborhood. Initially skeptical, he participated for more than a decade, wearing a sleep monitor and fitness watch, answering detailed personal surveys and eventually taking cognitive tests twice. Those last assessments were meant to capture cognitive changes, specifically Alzheimer’s disease. Blair and the other roughly 600 participants may never learn the results, even though researchers have all the data and had promised feedback.

Tamara Dubowitz, one of the primary investigators on the study, a professor at the University of Pittsburgh and chair of epidemiology, spoke only in her personal capacity. She said the real loss was that participants were promised information and feedback based on their two cognitive tests or assessments. Researchers were given 90 days to shut down the study, more than five months earlier than expected and a year earlier than hoped. That is far too little time to conduct cognitive “adjudications,” in which a neuropsychologist and geriatric psychiatrist were expected to interpret the results of all 600 participants; the researchers now cannot pay those experts.

The funding cuts could unnecessarily delay diagnosis of Alzheimer’s disease or dementia syndromes in the group, conditions whose treatments rely on early diagnosis. Nearly 7 million people in the US live with Alzheimer’s. Most are white, but Black Americans have nearly double the risk of developing Alzheimer’s dementia, according to the Alzheimer’s Association. For decades, that disparity was framed as an “individual risk factor.” Researchers and theorists have begun to reframe it as the result of forces far outside individual control, such as neighborhood divestment and the weathering effects of discrimination and trauma, factors validated through years of research. As Blair and other participants shared their life stories, habits and biometric data through surveys, wearable monitors, blood-pressure cuffs and scales, the impact of those forces was chronicled as data.

There is no single source accounting for race in Alzheimer’s research, but clinical trials and research studies are known to skew toward wealthy and white participants. Of more than 12,000 brain-imaging studies on Alzheimer’s, only about 700 report race at all. Studies that do report race have more than 87% white participants. As of 2020, census data found about 58% of the US population was white.

As the Trump administration attempts to remake science according to its own priorities, work such as Dubowitz’s has been labeled “DEI” or unscientific. Blair called the cancellation of the study, which the community trusted more each year researchers stayed, “clear” retribution. “If you don’t agree with me, you’re going to go to the woodshed,” he said, adding, “What has this administration done that has not been a retribution?”