Parkinson’s UK Opens Initiative to Bring Racial Groups Into Research
The organization announced its initiative in March, aiming to improve ethnic representation in Parkinson’s investigations and clinical trials — with an early focus on Black and Asian patients in the United Kingdom. Its overarching goal is to ensure better treatments and care for all.
To that end, Parkinson’s UK has put together a steering group that will help guide the project, which is expected to run between 12 and 18 months. The group is comprised of patients, researchers, and Parkinson’s UK representatives who are of Black, Asian, and mixed heritage. While as many as one in every 20 Parkinson’s patients in the U.K. are of those backgrounds, they are underrepresented in research into better treatments, the organization states in a press release.
“I became involved in the steering group to enable a more complete picture of Parkinson’s to be captured,” said Shafaq Hussain-Ali. “Only once a problem is understood in its entirety can it be fully addressed. For this we need those with Parkinson’s from all communities to take part in research.
“By achieving that fuller picture, it is my hope that better solutions will be found for the problems that all people with Parkinson’s face!,” she added. “Being in the steering group has been a fantastic experience. I look forward to seeing how our efforts to encourage others from minority groups to take part in Parkinson’s research translates into improvements for all communities.”
To help move the effort forward, Parkinson’s UK is collaborating with Egality Health and COUCH Health, both private companies promoting more inclusive and innovative research. A workshop planned through the partnerships will explore how work can be done with community organizations to improve research engagement in Black and Asian communities.
The three groups will also conduct in-depth interviews with Black, Asian, or mixed-race patients who are not currently participating in research or connected to Parkinson’s UK.
“It’s fantastic to work with Parkinson’s UK, an organization committed to taking practical steps to improve representation in their research,” said Annette Crosse, founder and CEO of Egality Health. “We look forward to working with our network of community connectors, the Parkinson’s UK team, and COUCH Health to develop new ways to involve underrepresented people and communities in their research.”
In a blog about the initiative, Parkinson’s UK notes that some ethnic populations may experience both the disease and its treatments differently. The organization cited a 2015 review of recently approved therapies that found that 20% of them were processed differently in the bodies of individuals of nonwhite racial or ethnic groups, meaning their response to treatment could differ.
“Race and ethnicity can contribute to interindividual differences … [that] may alter risk–benefit in certain populations,” the review’s scientists wrote.
Research has also shown that, due to a genetic mutation, North African and Ashkenazi populations are more likely than members of other communities to develop Parkinson’s. The disease is also known to affect more men than women, although reasons have not been identified.
There also is a need for more research into the role societal and cultural differences may play in how Parkinson’s is experienced, as well as how needs and preferences among certain populations may affect treatments and outcomes, the organization said.
The Parkinson’s UK project is initially focusing on people of Black, Asian, and mixed-race lineage — which represent up to 13% of the U.K. population — but will eventually expand to include other groups.
Initiative objectives include making research more accessible to people of these ethnic and racial backgrounds, and making sure that studies and clinical trials supported by the organization seek out these patient groups.
“It is very commendable of Parkinson’s UK to recognize that there is an issue in regard to diversity and inclusion in Parkinson’s research,” said Katie Rishi, CEO and co-founder of COUCH Health. “We are looking forward to working with the Parkinson’s UK team to support them to engage with different communities and build trust for future potential research opportunities.”
Ethnic minorities who would like to participate in the Parkinson’s UK initiative are asked to send an email to [email protected].