Bringing equity to research and treatment of Parkinson’s disease

More than a decade into treating patients with Parkinson’s disease, Tao Xie, MD, PhD, Director of the Parkinson's Disease and Movement Disorder Clinic at the University of Chicago Medicine, saw a troubling trend.

By the time they saw a specialist, many of his Black patients were further along in their disease progression than white patients. They would often seek care at an emergency department instead of seeking a referral or a neurologist. They suffered in silence for years before getting help.

Xie realized that most studies on Parkinson’s disease primarily focused on white patients, leaving an enormous racial equity gap in research as well as care access. To him, the two seemed connected.

Xie’s work focuses on studying and implementing state-of-the-art treatments for Parkinson’s disease and other movement disorders while addressing these racial disparities.

"Some literature says that white people are more likely to get Parkinson’s disease, but if Black patients aren’t part of these studies, how do we know that’s true?” said Xie.

Xie’s work focuses on studying and implementing state-of-the-art treatments for Parkinson’s disease and other movement disorders while addressing these racial disparities. Since 2017, he has received grants from the Parkinson’s Foundation and Michael J. Fox Foundation for Parkinson’s Research (MJFF) and research support from National Institutes of Health (NIH) to study this gap. He is committed to learning who is most affected by Parkinson’s, how they are affected, and ways to eliminate barriers to care.

UChicago Medicine is in a unique position to advance equitable research and treatment, he said, because of its location on the South Side of Chicago and its diverse patient population.

In a 2021 paper published in Parkinsonism and Related Disorders, Xie lead a research team that reviewed electronic health records of Parkinson’s patients treated at UChicago Medicine between January 1, 2006 and October 31, 2017. Of 2033 patients, 725 were Black, making the survey the largest single-site study on Black Parkinson’s patients.

Through this retrospective study, the research team found that Black patients were four years older than white patients at time of diagnosis, more likely to smoke and live in a low-education and -income community, and have limited health insurance coverage. They were also more likely to receive care through the emergency room, but less likely to be on medication to treat their Parkinson’s disease.

According to Xie, head of the Deep Brain Stimulation (DBS) Program, these findings show the enormous racial disparities when it comes to Parkinson’s disease care. While the disorder has no known cure, more than 20 treatments, from medication to deep brain stimulation, can greatly improve patients’ quality of life.

To me, Parkinson’s is one of the major diseases in neurology where we can really make patient’s life better and can manage many of their symptoms.

“To me, Parkinson’s is one of the major diseases in neurology where we can really make patient’s life better and can manage many of their symptoms,” he said. “If we’re seeing someone four years later than usual, that’s four years we could have helped.”

Quantifying a four-year diagnosis difference is a step toward drilling down into why this gap exists, and whether targeted awareness and education campaigns about Parkinson’s symptoms might prompt patients to seek specialized help sooner.

Xie also is part of the Black and African American Connections to Parkinson’s Disease (BLAAC PD) study, sponsored by the MJFF. It’s a multi-site group exploring the genetics of Parkinson’s disease in Black patients. In 2022, the group published a letter in the journal Movement Disorders about the disparity in Parkinson’s research. The outlined goals: to recruit more Black patients to Parkinson’s disease studies and to draw attention to statistics that might be skewed to show higher prevalence of the disease in white populations.

Xie is also part of the Racial Disparities in Parkinson Disease study, a multi-site project looking at the clinical phenotype, management and genetics, sponsored by NIH.

Xie recently received an additional $470,000 in funding from MJFF to study healthcare access and disease course in Black versus white patients, focusing on patients at UChicago Medicine. Ultimately, he hopes that this work will inform better care for more diverse Parkinson’s patients.

In addition to his efforts to provide better care to Black and African American patients, Xie continues to work toward ensuring that research and treatment breakthroughs are accessible to everyone in the Chicagoland area. As such, he was part of the translation and publication of the first Chinese version of the Parkinson’s Disease Handbook released in the U.S. by the American Parkinson’s Disease Association.

“I think it’s a meaningful thing to do, to pay attention and contribute whatever we can to make sure we get this information out to people where and in a form they can access," Xie said.