Parkinson’s reach extends well beyond cultures and borders. In the United States, an estimated 90,000 people are diagnosed with PD each year, with 12 million people projected to be diagnosed globally by 2030.
Despite its widespread nature, the majority of genetic studies on Parkinson’s have historically been centered on individuals of European descent. Though Hispanics account for roughly 17% of the US population, they are significantly underrepresented in these clinical studies.
A Lack of Representation in Data
The National Institutes of Health reports that Hispanics represent only 7.6% of the racial and ethnic minorities in clinical trials. Limited data exists on minority enrollment in PD research alone, though it is estimated that about 8% of participants are non-white, meaning Hispanic representation is likely even lower.
Barriers to Research
A 2021 study sought to investigate these barriers to Hispanics with PD through surveys and interviews. Overall, the study found that participants linked to a tertiary center were aware of ongoing research studies, trusted researchers, and were interested in research.
In contrast, those not linked to a tertiary center were unaware of research studies, although they strongly endorsed the value of research and exhibited a desire to participate. This stresses the importance of physician-to-patient communications on resources and research opportunities.
In fact, the largest reported barrier in research participation was regarding language and communication. Participants expressed the importance that the research team spoke their native language and helped to make their families comfortable.
Communications issues and health literacy have long been an obstacle in the medical community. The PD community and medicine as a whole will benefit from education, supportive services, and research opportunities that incorporate and normalize the use of Spanish on a large scale.
What is the Risk of Parkinson’s Disease in the Hispanic Population?
While data representation continues to be an issue, a few findings may give a better, if broad, picture of how PD impacts the Hispanic population.
According to a 2010 study, Hispanic males over 65 are at the greatest risk of being diagnosed with Parkinson’s disease.
The elevated risk is attributed to the growing Hispanic population, increased life expectancy in the United States, and possible exposure to pesticides at an early age.
Further, the study found that Caucasians, both Hispanic and non-Hispanic, are twice as likely to develop Parkinson’s disease as Black or Asian Americans. This study was based on data from 36 million Medicare recipients and was the first to produce notable information on patterns of PD in minorities.
Does PD Present Differently in the Hispanic Population?
A 2020 study suggests that Hispanic populations may experience a more severe form of PD-related dementia and/or increased severity of behavioral and psychological symptoms in dementia.
Overall, however, there is little data on how or if Hispanic populations experience symptoms of PD differently.
The general symptoms that are exhibited across populations include:
- Uncontrollable shaking and tremors
- Slowed movement
- Difficulties with balance
- Stiffness in limbs
- Anxiety and depression
- Difficult swallowing
What Is Being Done to Promote Diversity in PD Research?
Minority representation, including that of the Hispanic community, continues to be an issue in Parkinson’s research and the medical field in general. Even as the global prevalence of Parkinson’s increases, little is known about the characteristics, risk factors, and genetics of PD in the Hispanic community.
The LARGE-PD study is an exciting step toward narrowing this knowledge gap. The Latin American Research consortium on the GEnetics of Parkinson’s Disease (LARGE-PD) was established in 2005 as a multicenter collaboration across Latin America in an effort to increase the knowledge about PD in these countries.
By creating the first large-scale PD case-control sample in Latin America, LARGE-PD research aims to identify both genetic and environmental risk factors across these communities.
At PCLA, we strive to promote diversity in treatment and resources made available to those experiencing PD. We currently offer support groups, online programs, and educational resources in Spanish and have specific outreach campaigns geared toward the Hispanic community of Los Angeles.
Parkinson’s impact extends across all cultures and backgrounds. The more we understand this impact, the more likely we are to create a better life for everyone that experiences PD.
Get in contact to learn more about how to get involved in Parkinson’s research and help lead the charge in creating a change in Los Angeles and beyond.