Author: Lucy White

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uMed sponsors upcoming GBA1 meeting in Montreal

uMed is sponsoring the inaugural GBA1 meeting taking place in Montreal at the end of June 2024. The meeting is focused on all aspects of GBA1 research and serves as a platform to collectively advance the understanding and treatment of GBA1-associated neurodegenerative diseases.

Mutation in the GBA1 gene has emerged as one of the most common genetic abnormalities associated with Parkinson’s Disease, with approximately 5-10% of PD patients carrying a GBA1 mutation in comparison to <1% of the healthy population.  This meeting aims to accelerate research and treatment for neurodegeneration related to GBA1, generating models, research tools, data, and additional resources all focused on GBA1 to share with the scientific community and industry.

The meeting will be held at the ‘The Neuro’ at McGill University in Montreal, Canada, and invites health professionals and stakeholders from academia and industry with an interest in GBA1 research.

uMed will also be presenting a poster – ‘Remote DNA Collection for Parkinson’s Research: Insights from AccessPD’ – on Thursday June 27th from 12.15, poster #6. The abstract outlines our experiences with remotely collecting DNA samples to analyze genetic variants and risk factors associated with PD.

Visit the event website for more information and to register for tickets.

 

How uMed’s AccessPD Cohort is building a complete patient picture with access to custom data and insights.

AccessPD is a unique patient cohort that combines the collection of genetic samples from PD patients at home with routinely collected EMR and additional outcomes, including wearable device data and clinically validated scales. This provides researchers with access to a rich source of regulatory grade data which can then be augmented with the collection of custom genetic samples and data as required to answer specific research questions. 

Furthermore, AccessPD enables the running of standalone studies within the infrastructure of the existing cohort, reducing the need to recruit  from scratch, therefore significantly reducing costs and accelerating research timelines.

Find out more about AccessPD here. If you are attending GBA1 and would like to discuss how AccessPD can support your research goals, please contact us at hello@umed.io to set-up a meeting at the event.

 

Parkinson’s Research Roundtable – 27th June

Parkinson’s Remote Outcome Measure Testbed (PROMT)

Using a platform registry model to evaluate novel digital endpoints/outcome measures for clinical trials and post-approval evidence creation.

uMed will be hosting a Research Roundtable on the first evening of the GBA1 Conference (June 27th).

This roundtable aims to obtain input from leading Parkinson’s researchers, drug manufacturers, digital device manufacturers and patient groups as the basis for a future proposal that can be presented to funders to enable the evaluation of multiple digital & novel endpoints through the AccessPD platform for use in upcoming Parkinson’s clinical trials.

Discussion points will include:

  • The identification of the most valuable endpoints to advance PD research
  • The potential of digital endpoints over existing scales
  • The requirement for new PRO scales, if any
  • What patient and/or caregiver preference data would be useful to track
  • Stages of disease progression as a focus for the evaluation of digital endpoints 

The roundtable is a closed event and by invitation only. If you are interested to find out more or attend please contact us at hello@umed.io.

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uMed announces the enrollment of 1000 patients into their AccessCMD Cardiometabolic Patient Cohort

uMed have announced the successful enrollment of 1000 participants into their AccessCMD Cardiometabolic Disease Cohort, just 2 months after the study launched in the UK.

The growth of AccessCMD within this time frame highlights the capability of uMed’s unique approach of patient identification and tailored engagement to rapidly build a database of pre-consented patients within specific disease areas.

AccessCMD provides researchers access to custom data and insights based on specific research criteria.

Unlike traditional registries that are static and do not allow for the collection of customised data, AccessCMD combines routinely collected EMR with outcomes collected directly from patients at-home including genetic tests, wearable device data and clinically validated scales.

This provides researchers with a rich source of regulatory grade data that can be further augmented with the collection of custom endpoints. Furthermore, AccessCMD enables the running of standalone studies within the infrastructure of the existing cohort.

The alarming rise in global prevalence of cardiometabolic disease, and the resulting economic and healthcare burdens associated with managing these chronic conditions, has prompted a surge of research into developing effective preventative and therapeutic measures.

In particular, the effectiveness of the GLP-1 receptor agonists has been hitting the headlines, with recent research highlighting the benefits of these drugs to significantly lower the risk of cardiovascular events.[1]

With these cardiometabolic disorders affecting an increasingly large proportion of the global population, there is demand for wide-scale research with groups that are representative of the entire population, allowing for a true understanding of these diseases and the impact of therapies and treatments. The challenge for researchers is finding a large enough group of patients that meet the very specific criteria to conduct robust studies.

uMed’s ACCESS Research Platform and AccessCMD protocol is embedded across a vast network of healthcare providers across the UK, providing access to a wide patient population and allowing for rapid identification of those with a diagnosis of cardiometabolic disease. Patients are sent tailored engagements, on behalf of their trusted healthcare provider, inviting them to participate in the Cohort, and are asked for their consent to be recontacted for additional research opportunities.

This unique approach, combined with fully remote data collection, mitigates biases that often arise in research due to factors such as patient location, socioeconomic circumstances, race, gender, and age. The result is the development of a diverse cohort of patients that can be rapidly and repeatedly contacted to collect additional data points as required.

AccessCMD continues to be offered to patients via their healthcare providers in the UK, and aims to launch in the US in by the end of 2024.

[1] https://www.clinicaltrials.gov/study/NCT03574597

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uMed helps address critical evidence gaps in cardiometabolic disease research

  • uMed launches pioneering AccessCMD patient cohort facilitating access to custom data and insights to help accelerate cardiometabolic disease research
  • Cardiometabolic disease is now the leading cause of mortality globally and is placing a huge financial burden on healthcare systems and the economy
  • uMed have already recruited over 500 patients into the cohort, achieving over 15% consent rate from the first patient engagements sent, with significant potential for expansion across UK and US healthcare networks 

uMed has announced the successful enrollment of the first 500 UK participants into their groundbreaking AccessCMD cohort of patients with cardiometabolic disease.

AccessCMD will provide researchers with unique tools to access custom data and insights based on specific research criteria, to accelerate research and understanding across this group of conditions.

Cardiometabolic Disease encompasses a range of conditions including type 2 diabetes, stroke, hypertension, and congestive heart failure. It is now the number one cause of mortality across the globe, accounting for 31% of global deaths. [1] 

In the UK the NHS spends around £10 billion a year on type 2 diabetes, approximately 10% of its entire budget,[2] and it is estimated that £7.4 billion is being spent on healthcare related to CVD, with an annual cost to the wider economy of £15.8 billion.[3]

With the prevalence of cardiometabolic diseases on a sharp incline globally, research into this group of diseases is on the rise. 

Following the success of initial engagements sent to patients, which resulted in a 15% consent rate, uMed is now rolling out further engagements via their extensive UK healthcare provider network. 

uMed’s unique approach to patient identification, outreach, and consent, combined with fully decentralised data collection, mitigates biases that often arise in research due to factors such as patient location, socioeconomic circumstances, race, gender, and age.

‘The conversion rate we achieved from our first engagements is compelling; if we extrapolate this rate to the eligible patient population covered by our healthcare provider network in the UK, we’ll be able to offer thousands of patients the opportunity to participate in research and very quickly build a unique and rich source of information in Cardiometabolic Disease” commented Anil S. Jina, MD, Chief Medical Officer & President North America, at uMed.

Unlike traditional registries that are static and do not easily allow for the generation of custom data, AccessCMD enables re-engagement with patients that have already consented to participate in additional studies. This allows for the rapid collection of custom data that holds the answer to specific research questions, in the form of electronic health records, clinical outcomes, patient-reported outcomes and biosamples. 

Dr Mark Toshner, Consultant Respiratory Physician at the University of Cambridge, and AccesssPD Principal Investigator, commented “The potential that AccessCMD holds for research is extensive. The prevalence of these diseases has grown at a substantial rate over the past 20 years and the consequence is a huge burden on the populations’ health and our healthcare systems,  so there is much research to be done to understand the mechanisms contributing to these poor health outcomes.

“Conducting research at a large-scale with patient groups that represent the entire population is essential for developing a true understanding of the disease and underlying burden or unmet needs. The challenge for researchers is finding enough patients that meet the very specific criteria to conduct robust studies.’

“AccessCMD provides researchers with access to custom data to answer their key research questions, as and when required, and even enables the running of standalone studies within the infrastructure of the existing cohort. This will significantly expedite the development of understandings and treatments to reduce the burden of these diseases.”

The launch of AccessCMD follows the success of uMed’s inaugural AccessPD cohort study, which has so far recruited over 500 patients diagnosed with Parkinson’s Disease in the UK, 

Additionally, the company has recently begun the roll-out of engagements to patients with Interstitial Lung Disease, with nearly 100 patients in the UK now consented into their AccessILD cohort.

The swift succession of AccessCMD underscores the popularity of uMed’s Cohort Platform Studies amongst both patients and healthcare providers, highlighting the value for researchers within cardiometabolic disease and many more disease areas. 

Plans are underway to launch AccessPD, AccessILD and AccessCMD in the USA in 2024.

 

 

[1] https://www.roche.com/solutions/focus-areas/cardiometabolic

[2] https://www.england.nhs.uk/2022/03/nhs-prevention-programme-cuts-chances-of-type-2-diabetes-for-thousands/

[3] https://www.gov.uk/government/publications/health-matters-preventing-cardiovascular-disease/health-matters-preventing-cardiovascular-disease#:~:text=Yearly%20healthcare%20costs%20in%20England,economy%20of%20%C2%A315.8%20billion.

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Manuscript: AccessPD as a next generation registry to accelerate Parkinson’s disease research

We are excited to share our first manuscript from AccessPD, co-authored by Dr. Yun Hsuan Chang from uMed and Professor Alastair Noyce from Queen Mary University of London, now published in the Nature Journal – NPJ Parkinson’s Disease.

Access the full publication here.

AccessPD represents a ‘next generation’ registry in Parkinson’s Disease, leveraging uMed’s ACCESS Research Platform to merge clinical outcomes from electronic health records with patient-reported outcomes directly from those within the AccessPD cohort.

The authors have adeptly presented the most common diagnoses before and after a Parkinson’s Disease diagnosis, the most commonly prescribed medications among the cohort, and identified participants who could potentially benefit from device-aided therapies using consensus criteria.

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uMed helps researchers move closer to understanding Parkinson’s risk factors

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%.
  • Over 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%. Over 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 about uMed and how the company is supporting Parkinson’s Disease research, please get in touch.

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Poster: Accelerating research on Parkinson’s disease and empowering patients through digital health technologies.