Parkinson’s UK – East London Parkinson’s Disease project

Published: July 2026

Summary

Parkinson’s UK co-funded a project to address inequalities in Parkinson’s Disease in east London, with a particular focus on the local Bangladeshi community. The project has led to the discovery of previously undocumented early signs of Parkinson’s. The team also translated study materials, including a common cognitive assessment tool, into Bengali to help ensure that Bengali-speaking participants were able to access the relevant information and be accurately assessed by researchers.

Background

In 2017, Professor Alastair Noyce noticed that the presentations of Parkinson’s disease in east London were often different to what is typically documented and observed. He suspected that this was due to a tendency among Parkinson’s studies to over-represent white, well-educated, otherwise healthy people living in affluent areas.

Action

The East London Parkinson’s Disease project was set up to formally record the experiences and features of Parkinson’s in the local population, with Professor Noyce as the Principal Investigator. The project sought to engage a diverse group of people with Parkinson’s disease from east London to better understand the symptoms experienced by people in this area, and to build a research platform for previously under-represented groups. Funding was provided by Parkinson’s UK for a clinical researcher to work on this project, who was able to speak Bengali and had links to the community. Subsequent funding from Parkinson’s UK was also provided in partnership with Cure Parkinson’s, Bart’s Health Charity, the Michael J Fox Foundation, the Virginia Keiley benefaction and the Medical College of Saint Bartholomew’s Hospital Trust.

A particular focus of the project from the beginning was to ensure that the local Tower Hamlets Bengali community was consulted and included in its work. In order to increase participation from under-represented South Asian and Black populations, the project recruited a diverse, multi-lingual team with researchers representing the same communities that they sought to enrol. They also offered greater flexibility for participants in order to reduce barriers to participation, for example by including an option for home visits as an alternative to the standard clinic-based appointments.

Participants were also offered the support of a translator if needed, and relevant materials were translated into Bengali including information sheets, consent forms and a validated tool for the assessment of cognitive impairment. The project also hosted local public engagement events to increase awareness of Parkinson’s disease, keep research participants up to date on study progress and aid in the recruitment of healthy controls.

Impact

The study has identified several differences between people living with Parkinson’s disease from underrepresented ethnic groups and those from White backgrounds. Most notably, it has found that people from South Asian and Black backgrounds were more likely to experience severe mobility issues as well as higher rates of cognitive impairment. South Asian participants also showed earlier onset of symptoms, suggesting that an underlying genetic factor may be involved.

The project has also uncovered new risk factors and early symptoms related to Parkinson’s that have never been documented before. Looking back through healthcare records of people in the east London area, the researchers were able to identify that a loss of hearing and epilepsy could be early indicators of Parkinson’s.

As well as noting differences in risk factors and disease presentation, the project has also highlighted how language, literacy and cultural differences can impact ESL (English as a Second Language) and people from ethnic minority backgrounds’ scores on cognitive assessment tools.

Explore further case studies, guidance and other resources on Equity, Diversity and Inclusion