COllaborative open platform E-cohorts for research acceleration in trials and epidemiology

Area of Science:

• Clinical research methodology
• Health informatics
• Patient engagement

Background:

• The traditional clinical research model is inefficient, relying on a "one-off" project-by-project approach.
• This model involves significant costs and time due to repeated infrastructure setup and dismantling.

Purpose of the Study:

• To introduce and validate the Collaborative Open Platform (COOP) e-cohort model for clinical research.
• To establish a sustainable and collaborative research infrastructure that overcomes the limitations of the traditional model.

Main Methods:

• Developing a platform to build a large community of patients willing to participate in research.
• Collecting patient-reported data, passively enriched by linkage with care and medico-administrative data.
• Allowing approved research teams to utilize the platform for observational or interventional studies.

Main Results:

• The Community of Patients for Research (ComPaRe) serves as a proof-of-concept COOP e-cohort.
• ComPaRe has enrolled 36,000 patients, generating over 4 million data points since 2017.
• 150 researchers have utilized the platform, leading to the funding of three nested clinical trials.

Conclusions:

• COOP e-cohorts facilitate a shift from independent studies to a collaborative research infrastructure.
• This model accelerates the research process by minimizing redundancy and waste.
• The platform enhances efficiency and reduces costs in clinical research endeavors.