Crowdsourcing Proposal Supporting Patient Engagement in Parkinson's Disease: A Digital Research Environment (DRE)‐Enabled, Patient Swarm Approach to Develop QSP Models

Seeking to incorporate the patient voice into a collaborative effort to develop a quantitative system pharmacology (QSP) model for Parkinson's disease (PD) we propose the creation of a "patient swarm" in conjunction with a digital research environment (DRE) connecting various academic centers of excellence and their compute environments to promote data sharing and model collaboration with patient engagement. Patients, their advocates, and other stakeholders are welcome to join the crowdsourcing effort with the intention of reading the relevant source literature and contributing thoughts on model priors and model development while sharing their personal disease trajectories. Training materials are provided from experienced modelers and clinical stakeholders and maintained on the DRE as a resource for the "Swarm." While a number of prominent modelers and clinical stakeholders are part of the initial effort to date, there is an open invitation to the global PD research community to join this effort and help contribute to a solution.

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Publication Details

Journal
The Journal of Clinical Pharmacology
Published
2025-04-22
DOI
https://doi.org/10.1002/jcph.70028
Primary Topic
Parkinson's Disease Mechanisms and Treatments
Type
article
Field-Weighted Citation Impact
0.00
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article

Crowdsourcing Proposal Supporting Patient Engagement in Parkinson's Disease: A Digital Research Environment (DRE)‐Enabled, Patient Swarm Approach to Develop QSP Models

Valvanera Vozmediano, Christopher Denaro, J. Barrett, Benedetto Piccoli et al.
The Journal of Clinical Pharmacology
Parkinson's Disease Mechanisms and Treatments
article

Crowdsourcing Proposal Supporting Patient Engagement in Parkinson's Disease: A Digital Research Environment (DRE)‐Enabled, Patient Swarm Approach to Develop QSP Models

Valvanera Vozmediano, Christopher Denaro, J. Barrett, Benedetto Piccoli, Stephan Schmidt, Scott Russell, Kyle Barrett, David Sibbald, Serge Guzy, Kevin Kwok
article en

Abstract

Seeking to incorporate the patient voice into a collaborative effort to develop a quantitative system pharmacology (QSP) model for Parkinson's disease (PD) we propose the creation of a "patient swarm" in conjunction with a digital research environment (DRE) connecting various academic centers of excellence and their compute environments to promote data sharing and model collaboration with patient engagement. Patients, their advocates, and other stakeholders are welcome to join the crowdsourcing effort with the intention of reading the relevant source literature and contributing thoughts on model priors and model development while sharing their personal disease trajectories. Training materials are provided from experienced modelers and clinical stakeholders and maintained on the DRE as a resource for the "Swarm." While a number of prominent modelers and clinical stakeholders are part of the initial effort to date, there is an open invitation to the global PD research community to join this effort and help contribute to a solution.

The Journal of Clinical PharmacologyVol. 65(9)
Rutgers, The State University of New Jersey (US), University of Florida (US), Clinical Trial and Consulting (US), Metrum Research Group (United States) (US), Aridhia (United Kingdom) (GB), Parkinson's Foundation (US)
Openalex Percentile: Top 86%
Parkinson's Disease Mechanisms and Treatments
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Crowdsourcing Proposal Supporting Patient Engagement in Parkinson's Disease: A Digital Research Environment (DRE)‐Enabled, Patient Swarm Approach to Develop QSP Models — Valvanera Vozmediano, Christopher Denaro, et al. · The Journal of Clinical Pharmacology (2025) | TGRS Research Map | TGRS