AccessCMD: Next-generation Cardiometabolic Cohort hits 2000 patient milestone in less than 4 months

Providing researchers with unparalleled opportunity to access novel endpoints

London, UK, July 10, 2024 – Healthcare evidence-generation and technology company uMed have announced the successful enrollment of over 2,000 participants into their AccessCMD Cardiometabolic Cohort less than 4 months after starting enrollment. 

The exponential growth of the cohort within this short time frame highlights the commitment of patients within this disease area to engage in research, and showcases the effectiveness of uMed’s unique model in providing research access that has previously been unavailable.

AccessCMD is a novel decentralised registry and integrated clinical research platform, ethics committee-approved under a master protocol framework. As with all uMed Cohorts, AccessCMD is powered by the Company’s ACCESS Research Platform which is partnered with a vast network of healthcare institutions in the UK and US. This enables rapid and targeted identification of patients via their health record data, and engagement via SMS, email, letter and phone, on behalf of their healthcare institution. Upon invitation to the cohort, patients provide their consent to be re-contacted for the collection of additional data or participate in additional research studies. 

Participants within AccessCMD actively contribute data from their Electronic Medical Records (EMR), genetic tests, wearable devices and patient-reported outcome surveys, offering an unparalleled opportunity for researchers within this disease area to access novel endpoints.

“From the rapid growth we have seen with AccessCMD it is clear that patients are willing and eager to participate in research, they just need to be provided the opportunity to do so, and at uMed we are empowering this unique access.

We achieve this through a combination of tailored communication on behalf of the patients’ trusted healthcare provider, offering research opportunities that are highly relevant to the individual’s health circumstances, and allowing patients to participate from the comfort of their own home” commented Anil Jina, MD. Chief Medical Officer at uMed.

With the rise in global obesity and related diseases, cardiometabolic research is capturing the attention of research groups as they work towards the development of new therapies and tools to address this health crisis. 

The potential for these therapies to benefit such a large proportion of the population is evident, however a challenge for researchers at all stages of the therapy lifecycle is the ability to access the required data points from large enough representative sub-cohorts.

Cardiometabolic disease describes numerous conditions, each interacting through intricate pathways and mechanisms that vary among individuals, many of which remain incompletely understood. Therefore researchers are often faced with the obstacles of finding a sufficient number of patients that meet their very specific study criteria, and obtaining the necessary endpoints needed to answer their research questions. Available databases and registries are static, preventing the easy collection of custom data, and site-based research is time consuming and expensive to set-up. 

“We’ve seen the huge impact of recent therapeutic developments within cardiometabolics, and for the many researchers now entering this field,   accessibility and speed are key.” commented Dr Matt Wilson, CEO & Founder of uMed.  “uMed is bridging the evidence gaps that currently exist between static databases and site-based studies, enabling the rapid collection of custom datasets without the requirement to start studies from scratch. AccessCMD presents researchers with a large cohort of pre-consented patients that researchers can rapidly re-contact to access additional custom endpoints to augment the expanding baseline dataset. ” 

“The rate of growth of AccessCMD is compelling and the potential for further growth is exciting.  Over a quarter of the population in the UK have risk factors, such high BMI, for serious cardiometabolic diseases. uMed’s integration with healthcare institutions across the UK is providing access to a large number of these patients. If we extrapolate the rate of growth we are seeing in AccessCMD to these wider population numbers, we expect to be able to improve access for patients to relevant research studies and to present researchers with important opportunities to extend their research to groups who have been historically underserved.” commented Dr Mark Toshner, Chief Investigator of AccessCMD

AccessCMD is currently recruiting patients across the UK via uMed’s healthcare network, with plans to launch the Cohort in the US by the end of 2024.

uMed partners with the Global Parkinson’s Genetics Program (GP2) to address emerging research demands in Parkinson’s Disease

  • Genetic samples remotely collected as part of uMed’s AccessPD Cohort to contribute to the international GP2 Program. 
  • Analyses of samples will be linked back to the AccessPD Core clinical dataset (combining electronic health record data and patient reported outcomes), providing PD researchers with comprehensive resources.
  • AccessPD supports GP2’s mission to expand sample collection from groups traditionally  under-represented in PD genetics studies.

Cambridge, MA, June 18 – Healthcare evidence-generation and technology company uMed today announced they have entered into a partnership with the Global Parkinson’s Genetics Program (GP2) to support expansion of the international genetic initiative. uMed will be providing access to genetic samples collected as part of their AccessPD Cohort Study

The Aligning Science Across Parkinson’s (ASAP) initiative launched GP2 in 2019, building on previous funding efforts from The Michael J Fox Foundation for Parkinson’s Research (MJFF).  ASAP is a coordinated research initiative to advance targeted basic research for Parkinson’s disease (PD). ASAP is devoted to accelerating the pace of discovery and informing the path to a cure for PD through collaboration, research-enabling resources, and data sharing.  

AccessPD is a unique Cohort Study of patients diagnosed with PD, that remotely collects data from pre-consented patients at home and links with EMR and clinical data to build a comprehensive regulatory grade dataset that can be further augmented with custom endpoints. 

Under the announced agreement, uMed will be contributing anonymized genetic samples, remotely collected from consented participants within AccessPD.

GP2 will perform genetic analyses of the samples to feed into the program, and results will also be linked back to additional endpoints within the AccessPD clinical dataset including ePROs, eClinROs, EHR and device data.  

The ongoing collection of genetic samples is part of the AccessPD protocol. uMed observes on average a 72% completion rate of the saliva-based genetic tests sent to patients within the cohort, highlighting the formidable engagement of participants, and the strength of uMed’s ACCESS Cohort model to build patient communities and encourage participation and retention.

Dr Matt Wilson, CEO & Founder at uMed commented “We’re delighted to be contributing to the GP2 program and excited about the impact that this partnership will have on AccessPD and the future of Parkinson’s research. AccessPD already provides researchers with a comprehensive picture of the patient, and this partnership with GP2 allows us to expedite the expansion of this rich dataset.  It’s programs like AccessPD and GP2 that will be game changing to research in the future, and we are proud to be part of the process!”

In alignment with GP2’s mission to expand global genetics studies to include populations underrepresented in research, AccessPD’s unique decentralized approach will maximise the involvement of these populations in the program.

AccessPD is underpinned by uMed’s ACCESS Research Platform which is embedded across an expansive network of healthcare institutions across the US and UK, and allows for engagement with patients on behalf of the healthcare provider.  Combined with the remote collection of data from patients at home, this approach provides access to large patient populations, including those that would normally face economic, geographical and disease-related barriers.

Press release on prweb.com

Find out more about AccessPD here, or chat to our team to discover how AccessPD can support your research goals.

Hot topics from IAPRD 2024

Advancements in Deep Brain Stimulation, advances in genetic analysis, and a requirement for refocus on non-motor symptoms

At the end of May our team attended the World Congress on Parkinson’s Disease and Related Disorders (IAPRD) in Lisbon. This annual event brings together researchers, clinicians, and other healthcare professionals with an interest in Parkinson’s Disease and other neurodegenerative disorders, and offers three days of clinically-relevant disease and treatment overviews and updates.

We’ve compiled some key insights gathered from the congress sessions and discussions, and explored how our AccessPD Cohort programme has the potential to support these advancements moving forward.

 

Key takeaway 1:

Significant advancements in Deep Brain Stimulation (DBS) are moving towards adaptive and personalised approaches. 

uMed’s AccessPD Patient Cohort provides researchers with access to a database of nearly 1000 Parkinson’s Disease patients that can be rapidly re-contacted and invited to ‘sub-studies’ without the need to set-up recruitment from scratch.

Our technology allows for the quick identification of patients within the cohort that match specific study criteria and that have already consented to be re-contacted for additional study opportunities. This enables rapid engagement and recruitment of pre-screened patients for interventional studies such as those focusing on DBS.

 

Key takeaway 2:

Genetic analysis is unveiling numerous variants associated with Parkinson’s Disease, enhancing our understanding of its pathogenesis and uncovering new potential treatment targets

Programmes such as the Global Parkinson’s Genetics Program (GP2) are pivotal in improving genetics knowledge to accelerate the development and deployment of therapeutic strategies for PD.

uMed has recently partnered with GP2 (keep an eye out for more news!) to support expansion of this international initiative through the provision of access to genetic samples collected as part of our AccessPD Cohort Study. GP2 will perform genetic analyses of the samples to feed into the programme, and results will also be linked back to additional endpoints within the AccessPD clinical dataset including ePROs, electronic Clinician Reported Outcomes (eClinROs), EHR and device data.  

This partnership will significantly contribute to developments in genetic analysis, as well as provide researchers with access to enriched data collected within AccessPD.

 

Key takeaway 3:

While much research focuses on motor symptoms, non-motor symptoms significantly impact patients’ quality of life and deserve more attention. 

AccessPD enables the remote collection of longitudinal data on symptoms via surveys, allowing for continuous monitoring of patients over time. This method facilitates the identification of patterns and trends in symptom progression, enabling more accurate patient stratification. By distinguishing between different subgroups of patients based on their symptom profiles, targeted interventions can be developed and implemented more effectively. 

 

The PD Movers Projects

We also had the pleasure of speaking with Alissa Pacheco, Clinical Research Manager at the Neurorehabilitation Research Laboratory, Columbia University, about the PD Movers project, an initiative started by a team of Columbia researchers to share the stories of Black and African Americans affected by PD.

Doctors and researchers at Columbia University Irving Medical Center (CUIMC) and Teachers College, Columbia University invited a group of Black and African American individuals with Parkinson’s Disease and their caregivers to come together to develop an educational guide for Parkinson’s disease (PD) designed specifically for the Black and African American community. 

Find out more at > https://www.neurology.columbia.edu/patient-care/specialties/movement-disorders/pd-movers-we-keep-moving-storybook

We believe AccessPD could learn from their success and implement similar strategies to boost diversity and inclusion within our own initiatives.

If you’d like to learn how AccessPD can support your research project please contact our team at hello@umed.io.

 

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.

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.

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.

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.

Redefining Patient Engagement Through Consumer Insights

In this article uMed’s CEO Matt Wilson discusses the untapped potential of harnessing data-led insights to drive personalized, meaningful consumer experiences within the healthcare sector. He examines how tailored communication and bespoke engagement throughout a patient’s healthcare journey has the potential to enhance health outcomes and reduce provider costs. And how it’s the key to opening up better engagement with clinical trials, new drugs and treatments, encouraging healthier behaviors and building trust with healthcare customers.

Read the full article here: Read Article

Why Technology is Key to Unlocking Clinical Trial Access in Underserved Communities

A great article from our CEO Matt Wilson featured in The Journal of mHealth on the use of technology to address the challenges of access to clinical trial participation in underserved communities.

The article emphasizes the need to support smaller, local healthcare providers that serve as a gateway to underrepresented, less wealthy communities, to build trust and address the disparity in clinical trial participation.

Using technology can alleviate the organizational burden of clinical trials on these smaller providers, and embed recruitment in routine practice.

Additionally, technology provides opportunity for tailored patient outreach and the inclusion of non-English speakers, ultimately democratizing research and promoting diversity.

Read the full article here.

uMed Partners with The Michael J. Fox Foundation

uMed Partners with The Michael J. Fox Foundation to Support Wide-scale Study Exploring Link Between Smell Loss and Parkinson’s

  • uMed partners with The Michael J. Fox Foundation to run its smell test study in the UK as part of a global programme to explore the link between smell loss and Parkinson’s disease
  • uMed will enroll eligible patients from over 500 primary care group providers and facilitate the distribution of 15,000 scratch-and-sniff home tests
  • Its technology and network address challenges facing clinical trials, which include engaging large and inclusive patient cohorts as well as empowering over-stretched healthcare professionals to contribute to important research

LONDON, 20 September 2023: uMed, the health and research technology company, today announced The Michael J. Fox Foundation for Parkinson’s Research (MJFF) has selected its service to support the global expansion of its wide-scale study exploring the link between loss of smell and brain disease.

The smell test study, which is part of MJFF’s landmark brain health initiative, the Parkinson’s Progression Markers Initiative (PPMI), will utilise uMed’s network of more than 500 primary care provider groups in the UK to engage eligible participants. uMed will facilitate the distribution of 15,000 University of Pennsylvania Smell Identification Tests (UPSIT), a scientifically validated scratch-and-sniff test of smell ability, to individuals aged 60 and older in the UK without Parkinson’s.

Current research into Parkinson’s indicates that 100% of major brain disorders are associated with smell loss and 96% of newly diagnosed Parkinson’s patients have lost some of this sense. In addition, the condition can precede diagnosis by years or even decades.

However, the challenge — as with many research studies — is in engaging large patient cohorts that represent a diverse population. While large academic centres and research sites are set up to support research, many struggle to enrol and retain large numbers of patients. Reuse of limited, local clinical populations can also affect the generalisability of findings to the wider population.

Across all research, 85% of clinical trials face delays and 30% never get off the ground due to a lack of volunteers. By leveraging technologies such as uMed, it’s possible to rapidly and efficiently reach more participants and enable the delivery of larger, more ambitious trials than ever before.

By partnering with uMed, The Michael J. Fox Foundation can access hundreds of primary care providers whose involvement in clinical studies is critical for the advancements in research. Without uMed, these non-traditional research sites often lack the financial and human capital or the technical tools required to regularly engage their patients while balancing care.

uMed will send an SMS invite to potential participants, aged over 60 and without a diagnosis of Parkinson’s, on behalf of the patient’s recognised care provider before taking them to a screening portal. The free and simple scratch-and-sniff tests will then be delivered to consenting participants who will upload their results online. Eligible volunteers will be contacted by a nurse and referred to a clinic site for additional follow-up. Volunteers who join PPMI at a site share critical information through clinical assessments, imaging scans and biological samples over at least five years.

“Advances toward better treatments and cures for Parkinson’s disease require partnership with a diverse, broad base of study participants,” says Maggie Kuhl, MJFF Vice President of Research Engagement. “More simple and efficient tools that can deliver participation opportunities will help us overcome barriers to engagement and connect with more potential volunteers. uMed’s network and service is a valuable tool in helping our PPMI study drive faster recruitment of representative populations, speeding breakthroughs for all.”

The study, which has started enrollment in the UK, has already seen increased engagement of potential volunteers wanting more information and consenting to receive smell tests at home. To date, a third of patients who have been sent an SMS invitation to the study are clicking through to the study website to find out more information. In addition, 11% have consented to receive a smell test kit at home.

Dr Matt Wilson, uMed’s founder and CEO, comments: “We are proud to play our part in accelerating significant advancements in Parkinson’s research. Our technology will help The Michael J. Fox Foundation to reach its goals of driving more than 100,000 UPSIT completions globally. Engaging with a patient cohort of this size is critical if we are to enhance our understanding of this progressive disease and develop advanced therapies to improve patient outcomes.”

Wilson adds, “That being said, we know how hard it is to get impactful research off the ground. Our technical infrastructure and consumer-based marketing techniques enable researchers to develop, manage and engage large-scale patient cohorts in research programs. What’s more, we are democratising access to research for non-traditional research sites and their patients who might otherwise lack the technical infrastructure and staff capacity required to engage tens of thousands of patients across multiple studies. The result is that many patients contacted by uMed have never been invited to participate in research before. In a separate Parkinson’s study supported by uMed, more than 80% of patients reported they had never been asked to participate in research before.”

The partnership between uMed and The Michael J. Fox Foundation follows uMed’s experience in successfully delivering other Parkinson’s studies including the Predict-PD study run by Queen Mary University of London (also a PPMI clinical site). uMed increased monthly patient enrolment by 275%, as well as successfully recruiting a large population of patients from ethnic minorities. It is also running an ongoing observational study AccessPD, a next-generation patient registry which is supporting the development of better treatments for patients with Parkinson’s.

– ENDS –