Over 10,000 people helping to understand Parkinson’s risk factors
Predict-PD is a study that aims to understand the risk factors of Parkinson’s. More than 10,000 people are now taking part and are representative of the ethnic diversity within the UK population.
Predict-PD is led by researchers at Queen Mary University London and funded by Parkinson’s UK. People aged 60 to 80 who have not got a diagnosis of Parkinson’s can sign up. The research aims to identify those at high risk of the condition before symptoms appear.
The milestone reached today has been made possible through a collaboration with a research technology company called uMed. Since March 2020, it has played a crucial role in finding participants for the study by working with healthcare providers to send text messages to people who are relevant for Predict-PD. This approach has also increased the ethnic diversity within the study, from 3% of participants being from a minority ethnic group to now 10% of the study group. This is more representative of the UK population.
What’s involved in Predict-PD?
The participants to date have filled in an online questionnaire covering their medical history. Some participants have also been asked to test their sense of smell and provide other samples, such as blood or saliva, all done by post from their home. Participants may then have been invited to take part in other studies that are relevant to them, based on their results.
This group’s health will be continually monitored, building a more complete picture over time. Through this the researchers are identifying common factors that are present in those that go on to get a diagnosis of Parkinson’s.
The overall aim is to understand who within the general population might be at higher risk of developing the condition. Ultimately leading to a better understanding of the early signs and symptoms of the condition, which will help in the search for new and better treatments.
Read more about why identifying people with Parkinson’s earlier is important.
Research needs to represent everyone
Dr Katherine Fletcher, Research Communications Lead at Parkinson’s UK, said:
"We know Parkinson's doesn't discriminate. It is vital that research is representative of the whole Parkinson’s community, something that currently is not the case. Having a wider pool of the UK population involved in clinical trials means we can ultimately learn more about the progression of Parkinson's. And speed up diagnosis and access to new and better treatments for all.
"By working with technology companies such as uMed, researchers can improve their studies and make them more representative. The success here will hopefully encourage others to think about the inclusivity of their research early and share tips and tools to reach this important goal."
Are you someone who does not have Parkinson’s aged 60 to 80? If so, you can take part in this study from home.
We believe Parkinson’s research should involve, include and represent all members of the community.
The East London Parkinson’s Disease project is working with the local Bengali community and other under-represented groups to make research more inclusive.