The East London Parkinson’s Disease Project (ELPD) is a study led by Professor Alastair Noyce at Queen Mary University London. This Cure Parkinson’s supported initiative seeks to better understand the experiences of people with Parkinson’s from diverse ethnic backgrounds.
Recently, the ELPD team published a paper in the academic journal NJP Parkinson’s Disease, which details the latest findings from the study. This project involves assessing the symptoms and manifestations of 218 people with Parkinson’s from White, South Asian, and Black ethnic backgrounds. The goal of this effort was to determine whether there are differences in the lived experiences and clinical presentations of Parkinson’s within these communities, especially those which have been historically underrepresented in Parkinson’s research.
What are the findings?
Overall, the study team noted several differences between those from underrepresented groups and those from White backgrounds. Most notably, they found that South Asian and Black participants had more severe motor symptoms. These differences appear to extend to non-motor symptoms as well. The study found higher rates of cognitive impairment in South Asian and Black participants, as well as higher rates of depression in South Asian individuals.
Who participated in this study?
In comparison to other areas of London, east London tends to be more diverse – for example, over 40% of the individuals living in Tower Hamlets, a large borough in east London, come from a South Asian background while around 7% come from a Black background [1]. This can be compared to Wandsworth, a borough in southwest London, where only 11.7% of the population identify as Asian, 10.1 % as Black, and 67.8% as White [2].
The research team therefore sought to recruit participants that accurately reflected the population it intended to represent. Of the 218 people with Parkinson’s who participated, 39% identified as South Asian, 44% as White, and 11% as Black. The proportion of South Asian individuals was higher in the control group, with 62% of the 90 participants identifying as such.
Because of the lack of research on these communities, it is difficult to determine why these discrepancies occur. One potential reason could be related to the prevalence of co-morbid conditions. For instance, the proportion of individuals with Type 2 diabetes was higher in South Asian participants (46%) than in White participants (24%). Some research has suggested that people with Type 2 diabetes are 30% more likely to develop Parkinson’s, and some will have more rapid progression of symptoms. Improving our understanding of the prevalence of conditions like Type 2 diabetes within underrepresented groups may help clinicians identify individuals who are at a higher risk of developing Parkinson’s, allowing for an earlier intervention.
Another interesting finding was that the age of onset may be lower in people of South Asian descent. This could potentially indicate an underlying genetic link. Although genetic variations – small changes in our genetic code that can impact how well a cell functions – are only found in approximately 10-15% of people with Parkinson’s, these mutations are more common in those with Young-onset Parkinson’s (YOPD) and can be higher within specific ethnic groups. For example, GBA1 variations – the most common genetic risk factor for Parkinson’s – are especially prominent in Ashkenazi Jewish populations [3].
Most of our understanding of genetic risk factors, however, is based on studies of predominantly White individuals. This has left a gap in our knowledge on how these variations may manifest in other communities. Recent studies have highlighted the importance of involving underrepresented groups in genetic research. For example, the Global Parkinson’s Genetic Program (GP2) published a paper last year detailing a new GBA1 genetic variant that was found in about 50% of patients of West African descent and not in White patients.
Why is this research important?
As exemplified by this study, there is a need to improve our understanding of how Parkinson’s presents in people from diverse backgrounds and improve diversity within research more broadly. Research directly informs and influences clinical care – without adequate representation, we will not be able to provide the most effective treatments or offer the same quality of care for everyone living with Parkinson’s.
Furthermore, we need to do more than just improve diversity within research studies; we also need to ensure that our methods for measuring change are appropriate for all participants. In the ELPD study, the researchers highlight how factors like language, literacy, and cultural differences can impact how people perform on the MoCA – a common cognitive assessment used in clinical practice and research. To help address this, the team used a validated Bengali version of the MoCA for Bengali-speaking participants. Small changes like this not only ensure that researchers are receiving accurate responses but also make participating in research more accessible and comfortable. Alongside, the team are testing other ways of assessing cognition.
We are tremendously grateful to the participants who give up their time to contribute to research and we are proud of the way we have managed to recruit in a manner that reflects the population of East London. This study identified more severe motor and non-motor symptoms in certain groups. We will now explore whether these are real differences (due to genetics, lifestyle, comorbid conditions or other factors) or apparent differences caused by tests that are not well-validated for patients from diverse backgrounds. Our team is committed to expanding research access and opportunities, and equitable care in East London and beyond.
Prof. Alastair Noyce and Dr Alexandra Zirra, Queen Mary University London
