Reaching for race equality in research
Parkinson’s affects people of all ethnicities and races, but we know that people from Black, Asian and Minority Ethnic backgrounds are particularly underrepresented in research. To deliver better treatments and care for everyone, we urgently need this to change.
We want Parkinson’s research in the UK to be inclusive and representative of everyone living with the condition.
This matters because some populations may have very different experiences of the condition and respond differently to therapies.
These differences may be due to variations in our underlying biology. A 2015 review of newly approved drugs found that about 20% were processed differently in the body or produced a different response in different racial or ethnic groups. Read the full study on the American Society for Clinical Pharmacology & Therapeutics website.
In Parkinson’s, research has revealed that North African and Ashkenazi Jewish populations are more likely to develop Parkinson’s due to a particular genetic mutation. And it’s well established that men are more likely to get Parkinson’s than women, although the precise biological reasons are still unknown.
Alongside biology, it’s important to recognise there are also important societal and cultural differences that can play a part in an individual’s experience of a condition and their treatment needs and preferences.
However, while there has been some research in people with Parkinson’s from Black and Asian backgrounds, what we know about the condition in these populations lags a long way behind what we know about it in White populations.
Read more about ethnicity and Parkinson's.
Taking the first steps towards change
To deliver better treatments and care for everyone we need research to be representative of the whole Parkinson’s population. Racial and ethnic minorities have historically been underrepresented in clinical trials, and we know that as a major patient organisation and research funder, we have an important role to play.
That’s why we’re launching a collaborative project to work with people from underrepresented communities and research professionals to drive real and lasting change.
To begin with, we are focusing this project on people from Black, Asian and Mixed race backgrounds. These groups represent up to 13% of the population but are currently underrepresented in UK research, and may have important underlying differences in terms of Parkinson’s. This is just a first step. We know that other important populations are also underrepresented in research and we hope this project will lead to outcomes that benefit them and further projects focused on these communities.
Over the next 12 to 18 months we want to develop a clear roadmap for the charity to drive race equality in research. This will include:
- steps we can take to make research more accessible, engaging and relevant to people from Black, Asian and Mixed race backgrounds
- steps we can take to make sure studies and trials we support proactively reach out to people from Black, Asian and Mixed race backgrounds
- setting clear and measurable objectives to ensure continued focus and resources for this work.
Driving this work forward
We’ve formed a steering group for this project who are shaping and guiding this work. The group is made up of people affected by Parkinson’s and research professionals from Black, Asian and Mixed race backgrounds, as well as colleagues from Parkinson’s UK.
We’re also partnering with organisations with expertise in this area, to help connect us to people within these communities to start conversations about research.