Ask the Researcher
Tao Xie, MD, PhD, is a Movement disorders neurologist at the University of Chicago and is also the Medical Director of the University of Chicago APDA Information & Referral Center*.
One of the research projects that is being spearheaded by Dr. Xie is an observational study investigating and comparing the clinical features and genetic profiles of Parkinson’s disease (PD) patients of African American versus Caucasian backgrounds.
We are excited about this important work and eager to learn the outcomes of Dr. Xie’s research. At APDA we want to help everyone impacted by PD get the care and support they need. The more we can learn about the differences and nuances in PD among different populations, the better we can be at reaching more people and caring for them in the best way possible.
We asked Dr. Xie about his work:
Q: What is the overarching goal of your research? What do you hope to find out?
A: The goal is to better understand the access to care, demographics, socioeconomics, clinical, and genetic features of African American PD patients as compared to Caucasian PD patients. University of Chicago is located on the south side of the Chicago, with an African American population that is more than one million strong, so our center is poised to comprehensively understand PD in this population.
If you search the literature, most of the studies done to date suggest that African American populations have a lower prevalence and incidence of PD as compared to Caucasians, although that data might be compromised by socioeconomic disparities and other reasons. Some studies also suggest that the clinical features of the disease might be different between these two populations. For example, African American patients with PD have been shown to present with more severe motor symptoms at their initial visit. The reason for this is unclear – is it due to delayed diagnosis because of socioeconomic disparities or due to a not-yet-understood reason? We also don’t yet know if there are clinical differences in non-motor symptoms between these two populations with PD. Finally, the genetics of Parkinson’s in non-Caucasian patients are also very poorly understood.
Through our research, we hope to address these and other unanswered questions.
Q: Could you describe how you perform your studies?
A: The study is divided into three phases. The first phase, which we recently completed is an analysis of the data in our electronic medical record in order to characterize the demographics, socioeconomics and clinical features of the African American and Caucasian PD populations.
Specifically, we compared the two groups on gender distribution, age at diagnosis, education level, household income and insurance type. We compared rates of non-motor symptoms such as mood disorders, cognitive impairment, and psychosis as well as medication usage for the motor and non-motor symptoms.
The second phase is to follow a well characterized group of both African American and Caucasian patients as their PD continues to progress. This will allow us to have more reliable and detailed data on evolution of symptoms, changes in medication management and development of comorbidities. This phase will test whether the conclusions drawn from the first phase are confirmed prospectively. The third phase will test whether there are differences in genetic profiles between the two PD populations.
Q: How do you recruit patients to your study?
A: We are mostly recruiting from our own movement disorders clinic, but have advertised outside our institution as well. We are recruiting at APDA education events and support groups to further spread the word.
Q: What if one of our readers wants to participate in your research, what should they do?
A: We would really appreciate additional participation! Potential participants can contact us by email at email@example.com or contact our APDA coordinator at the University of Chicago at 773-702-2039. We will get back to them as soon as possible to arrange a visit with us.
Q: Can you tell us a little bit about what you have found out so far?
A: We have just finished the first phase of the study and we have some interesting findings. We studied about 2,000 patients from our database, seen between 2006 and 2017. Thirty six percent of the patients were African American – which to our knowledge, is the largest volume of African American PD patients from a single center that has been studied so far. In most institutions, African American patients constitute about six percent or less of the patient population.
We found that there are significant differences in sex distribution, age at diagnosis, socioeconomic markers, non-motor symptoms, comorbidities, and medication usage for motor and non-motor symptoms between African American PD and Caucasian PD patients, with many features being studied or revealed for the first time. We are currently writing up our results for publication. These results could help us better understand the unique features of African American PD patients, implement a better health care plan and provide better quality of care in the future. We are now in the second phase of the study designed to corroborate and extend our findings as planned.
Q: What fuels your passion for research?
A: I am motivated by the hope that through our research we will gain a better understanding of PD and be equipped to provide better quality of care to all our patients.
Tips and Takeaways
- Important PD research is constantly taking place across the APDA network.
- Tao Xie, Medical Director of the APDA Information & Referral Center at the University of Chicago is studying the unique features of PD in the African American population.
- Understanding how PD affects different populations will ultimately enable Dr. Xie’s team, and others, to provide better quality of care to people living with PD.
- If you’re in the Chicago area and are interested in participating in Dr. Xie’s research, you can send an email to firstname.lastname@example.org or call our APDA I&R coordinator at the University of Chicago at 773-702-2039.
*APDA has 20 Information & Referral (I&R) Centers across the country that provide grassroots support to people with PD and their families by providing programs and services such as support groups and exercise and wellness classes, connection to resources in the area and much more. To see if there is an APDA I&R Center near you, please visit www.apdaparkinson.org/community.