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

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.