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Name NEURO Cohort
Long Name NEURO Cohort
Description The first Task Force that Neuronet launched is the NEURO Cohort. It intends to build a European parent cohort that continuously follows up patients across Europe, to serve as basis to facilitate specific research projects and studies. Beginning as a grassroots initiative, NEURO Cohort is based on mutual trust and collaboration across a network of research and clinical sites according to jointly agreed, minimal protocols and policies that are designed to enhance visibility and participation of sites in the research landscape, and to improve initiation of further studies in the neurodegeneration field. The NEURO Cohort represents a coalition of circa 40 active sites from 13 countries in Europe. In totality, these sites work across approximately 50 research protocols which include at least 25,000 European participants. At present, the effort is progressing through its initial objectives. Specifically, with the assistance of the Medical Informatics Platform within the eBrains infrastructure, it has established the technical framework to complete a proof-of-concept pilot across seven sites. Furthermore, the team is engaged in ongoing conversations with potential funders who are interested in supporting the NEURO Cohort initiative through studies that could be run in collaboration with its sites. NEURO Cohort has the potential to become a unique asset, in Europe and worldwide, that unites research and clinical sites in an attempt to overcome research fragmentation, helping accelerate innovative research in an unprecedented way.
Objectives
Website https://www.imi-neuronet.org/task-forces/
Start date 01-01-2021
End date 31-08-2022
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The NEURO Cohort Data Model

The NEURO Cohort has developed a common data model (CDM) to describe its minimum dataset, which includes demographic, biomarker and neuropsychological data. The CDM was developed in collaboration with NEURO Cohort sites and the Medical Informatics Platform, and is available for reuse. For more information, please contact: lkillin@synapse-managers.com

ontologies-clinical-neuro-cohort-4 NEURO Cohort

 

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