Abstract
Parkinson’s disease (PD) is a progressive and chronic neurodegenerative brain disorder that affects
approximately 1 million people in the United States. Parkinson’s disease affects all racial and ethnic
populations; however, members of ethnic and racial minorities have been historically underrepresented in PD
research. This underrepresentation has biased basic understandings of a disease that is already known to be
highly heterogeneous in terms of clinical presentation and symptom progression. In particular, non-motor
symptoms experienced by people living with PD are markedly different between individuals, and not well
understood in minority populations. These disparities are consequential because timely treatment of non-motor
symptoms can improve quality of life and delay disability. Therefore, it is imperative that the PD community
broaden its inclusivity by better understanding race- and ethnicity-related disparities of non-motor symptoms in
PD. Our objective is to investigate how race and ethnicity influence the occurrence (Aim 1), treatment (Aim 2),
and burden (Aim 3) of non-motor symptoms among Black/African American and Latino versus White non-
Latino people living with PD. We will use data from the Fox Insight study and the TriNetX platform to address
our research objectives. The Fox Insight Study is a groundbreaking, decentralized, online study that has
successfully enrolled and followed hundreds of people with PD who are Black/African American or of Latino
ethnicity or origin, and thousands of White non-Latino people living with PD. The TriNetX platform is a
federated network of > 50 healthcare organizations sharing electronic health records data, and includes
thousands of patients living with PD who are of Black/African American race and Latino ethnicity. In Aim 1,
these data will be used to compare the occurrence of non-motor symptoms between historically
underrepresented racial and ethnic (Black/African American, Latino) populations versus more frequently
studied (White non-Latino) populations among people living with PD (Aim 1). Next, Aim 2 will compare
frequencies of pharmacologic treatment use for non-motor symptoms between historically underrepresented
racial and ethnic (Black/African American, Latino) populations versus more frequently studied (White non-
Latino) populations among people living with PD. Finally, Aim 3 will compare the most bothersome symptoms
between historically underrepresented racial and ethnic (Black/African American, Latino) populations versus
more frequently studied (White non-Latino) populations among people living with PD. At the conclusion of this
research project, the goal is to have reduced some of the disparities that exist around the current knowledge of
PD heterogeneity in underrepresented populations.