uMed helps Queen Mary University of London and University College London move closer to understanding Parkinson’s risk factors as first-of-its-kind study exceeds 10,000 participant milestone

• PREDICT-PD a joint study between Queen Mary University of London and University College London (UCL), and funded by Parkinson’s UK, has met its goal of enrolling more than 10,000 participants.
• The research project, which identifies and engages people aged between 60 and 80 years old who did not have Parkinson’s, aims to identify those at high risk of the disease before symptoms appear.
• uMed enrolled over 7,000 eligible participants through its network of 500 primary care group providers in the UK, and increased monthly enrollment by 275%. 
• One in 10 patients invited by uMed consented to participate, compared to the industry average patient consent rate of 3% for clinical research.
• uMed’s involvement also led to the enrollment of a larger population of patients from ethnic minority groups, increasing diversity from ~3% to ~10% of the study’s total cohort.

LONDON, 14 February 2024: PREDICT-PD a groundbreaking 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 crucial 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. It 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.

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 enrollment by a staggering 275%. 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% 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.

Professor Alastair Noyce, Consultant Neurologist and Researcher at Queen Mary University of London’s Wolfson Institute of Population Health, comments: “Our study was one of the first to focus on the earliest phases of Parkinson’s, offering critical insights into this stage of the disease, and recruitment has progressed at a pace we never expected. We are another step closer to understanding who in the general population might be more likely to be diagnosed with Parkinson’s and expedite the discovery of improved treatments and, ultimately, a cure for this debilitating condition.

“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.”

Dr Katherine Fletcher, Research Communications Lead at Parkinson’s UK, comments: “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.”

Notably, uMed’s involvement has led to the enrollment of a large population of patients from ethnic minorities, increasing diversity of the study’s total cohort from 3% to 10%. Its technology 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 could be targeted with bespoke messages or visuals, increasing participation of underrepresented groups. 

Ethnic diversity is a vital issue in Parkinson's research however people from minority backgrounds continue to be underrepresented. The large 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 It means understanding the genetic basis, environmental risk factors, clinical manifestations and response to treatment is heavily biased, as described in Ethnic Variation in the Manifestation of Parkinson's Disease, a paper co-authored by Professor Alastair Noyce.

Dr Matt Wilson, uMed’s founder and CEO, adds: “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.”

In addition to uMed’s collaboration with Professor Alastair Noyce on the PREDICT-PD study, he is also principal investigator on uMed’s ongoing observational study AccessPD, a next-generation patient registry supporting the development of better treatments for patients with Parkinson’s. 

For more information on uMed and how it enables more healthcare providers and patients to participate in studies that are vital in improving treatment for Parkinson’s, visit www.umed.io. 

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Editor’s notes

About uMed

uMed is a clinical research and population health technology company dedicated to transforming the lives of those living with disease by improving access to research and healthcare.  The uMed platform enables healthcare institutions to participate in programmes that target specific patient groups for research and population health activities by taking on the workload of identifying, screening and engaging their patients on their behalf.

The platform uses health record data to target specific patient groups, and then automates and tailors communication with patients including collection of patient-reported outcomes.  This approach enables healthcare institutions to participate in a range of programmes including clinical trial recruitment, registries and population health initiatives to address care gaps at scale, and without burden to clinical staff. 

uMed was founded by Dr. Matt Wilson, an NHS doctor and anaesthetist. The healthtech works with top pharmaceutical companies and academic researchers from across the globe, and its technology is embedded across a vast network of providers that represents millions of lives across the UK and US. For more information, visit https://www.umed.io/ 

About Queen Mary University of London 

At Queen Mary University of London, we believe that a diversity of ideas helps us achieve the previously unthinkable.

Throughout our history, we’ve fostered social justice and improved lives through academic excellence. And we continue to live and breathe this spirit today, not because it’s simply ‘the right thing to do’ but for what it helps us achieve and the intellectual brilliance it delivers.

Our reformer heritage informs our conviction that great ideas can and should come from anywhere. It’s an approach that has brought results across the globe, from the communities of east London to the favelas of Rio de Janeiro.

We continue to embrace diversity of thought and opinion in everything we do, in the belief that when views collide, disciplines interact, and perspectives intersect, truly original thought takes form.

About Parkinson’s UK 

Parkinson’s is what happens when the brain cells that make dopamine start to die. There are more than 40 symptoms, from tremor and pain to anxiety. Some are treatable, but the drugs can have serious side effects. It gets worse over time and there’s no cure. Yet.

Parkinson’s is the fastest growing neurological condition in the world. Around 153,000 people in the UK have Parkinson’s.

We are Parkinson's UK. Here for everyone affected by the condition. Funding research into the most promising treatments, taking us closer to a cure every day. Fighting for fair treatment and better services. 

One of our priorities is to better understand barriers to research participation. This includes our Race Equality in Research project to make sure that voices of people underrepresented in research are included at every stage of the conversation.

Read more facts and statistics.

Further information, advice and support is available on our website, www.parkinsons.org.uk or our free, confidential helpline on 0808 800 0303.