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 program has the potential to support these advancements moving forward.

 

Key takeaway 1:

Significant advancements in Deep Brain Stimulation (DBS) are moving towards adaptive and personalized 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

Programs 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 program, 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.

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.