Details

Autor(en) / Beteiligte

• Tran, Viet-Thi
• Ravaud, Philippe

Titel

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

Ist Teil von

• Journal of clinical epidemiology, 2020-08, Vol.124, p.139-148

Ort / Verlag

United States: Elsevier Inc

Erscheinungsjahr

2020

Link zum Volltext

Quelle

Elsevier ScienceDirect Journals Complete

Beschreibungen/Notizen

• The current clinical research system relies on a “one-off” project-by-project model involving a costly and time-wasting permanent construction and deconstruction of the research infrastructure. We propose a new model of research relying on collaborative principles: the COllaborative Open Platform (COOP’) e-cohort. The COOP’ e-cohort aims at building a large community of patients willing to participate in research by contributing to the generation of a large database of patient-reported data, passively enriched, at the individual level, by linkage with routinely collected care and/or medico-administrative data. Approved teams can use the platform and benefit from already enrolled participants or collected data or add new online questionnaires to perform observational or interventional studies to answer a broad range of research questions. The Community of Patients for Research (ComPaRe) is a proof-of-concept COOP’ e-cohort in the field of chronic conditions that was launched in 2017. As of April 2020, 36,000 patients have joined the project and contributed to more than 4 million data points. Patient-reported data will be enriched by linkage with the French national health system databases and with hospital data for patients receiving care in the Paris region. Since 2017, 150 researchers have used the platform for research projects. Three clinical trials nested in ComPaRe have been funded. By moving from myriad independent studies to a large collaborative infrastructure of research, COOP’ e-cohorts will accelerate the research process by avoiding the redundancy of many steps common to all research projects and by limiting waste of research. •The current clinical research system is in crisis. It relies on a “one-off” project-by-project model, which is slow, complex, and inefficient.Key findings•The COllaborative Open Platform (COOP′) e-cohort is a collaborative and permanent infrastructure for research. It is based on a large e-cohort of patients followed up using online questionnaires aimed at capturing patient-reported outcome and experience measures, that is enriched, at individual level by linkage with external data sources.What this adds to what was known?•The COOP′ e-cohort acts as a platform to accelerate research. Approved researchers can apply to answer a broad range of research questions by using participants recruited, by data collected, or by adding new online questionnaires.•ComPaRe (Community of Patients for Research) is a proof-of-concept COOP′ e-cohort in the field of chronic conditions, in France. ComPaRe was launched in 2017 and 30,000 patients have already joined the project, contributing to 3 million data points. More than 100 researchers in France are already using the platform to conduct research.