Established in 2022, the AccessPD registry aims to create a comprehensive database integrating electronic health records, self-reported outcomes, and genetic data from Parkinson’s disease (PD) patients.
This report outlines our experiences with remotely collecting DNA samples to analyze genetic variants and risk factors associated with PD. View the poster here.
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.
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:
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:
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:
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.
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 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.
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 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 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.
