A research project which aims to identify people at higher risk of Parkinson’s disease or before the symptoms appear has exceeded its milestone of 10,000 participants.
uMed, the health and research technology company that has supported PREDICT-PD since March 2020, played a critical role in expanding the study’s participant base through its network of over 500 primary care provider groups representing five million patients in the UK.
The company achieved this by linking aggregated health record data to pre-screen eligible participants, meaning it was able to rapidly engage 36,269 patients via text message on behalf of the patients’ healthcare providers, without imposing any additional workload.
Professor Alastair Noyce is Consultant Neurologist and Researcher at Queen Mary University of London’s Wolfson Institute of Population Health.
He said: “The success of the PREDICT-PD study demonstrates the impact of leveraging technology and the use of health record data to accelerate research.
“uMed’s ability to rapidly identify large populations of eligible participants using EHR, combined with automated communication sent on behalf of the patient’s healthcare provider, has meant we’ve seen a significant increase and speed in enrollment each month since working with them.”
By making the study accessible to a wider population and engaging only suitable patients, uMed has recruited over 7,000 participants to PREDICT-PD, increasing monthly enrolment by 275 per cent.
One in 10 patients invited by uMed on behalf of their recognised healthcare provider consented to participate in the study, which is a significant achievement given that only 2 per cent of the population in England participates in clinical trials each year, underscoring uMed’s ability to engage a larger portion of the UK population in vital clinical research.
Dr Katherine Fletcher, Research Communications Lead at Parkinson’s UK, said: “This is one of several ground-breaking studies Parkinson’s UK is proud to be funding and we are delighted that there’s been such a positive take-up in research participation for PREDICT-PD.”
“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, speed up diagnosis and access to new and better treatments for all.”
uMed’s involvement has led to the enrolment of a large population of patients from ethnic minorities, increasing diversity of the study’s total cohort from 3 per cent to 10 per cent.
Its technology has enabled participating healthcare providers to move away from standardised patient outreach to individually tailor communications.
By using Electronic Health Records (EHR) to segment cohorts into different subgroups, eligible patients can be targeted with bespoke messages or visuals, increasing participation of underrepresented groups.
Ethnic diversity is a vital issue in Parkinson’s research but people from minority backgrounds continue to be underrepresented.
The vast majority of UK participants are affluent, well-educated and white.
This is currently reflected in research not only in the UK but across Europe and North America and means understanding the genetic basis, environmental risk factors, clinical manifestations and response to treatment is heavily biased.
Dr Matt Wilson, uMed’s founder and CEO, said: “Despite a step change in awareness on the need for diverse participants, clinical trials in western health systems fail to reflect real world diversity.
“Particularly, there is limited evidence on the risk factors of Parkinson’s in Black, Asian and Hispanic populations but PREDICT-PD has clearly increased ethnic diversity and therefore the generalisability of its findings for the general UK population.
“The study team at Queen Mary University of London achieved this by targeting eligible participants, who identified as being from an ethnic minority, with images of ethnically diverse patients in study communications.
“Tailoring communications in this way resulted in a significant increase in the proportion of participants coming from a minority background.”
