The “Real world Outcomes across the AD spectrum for better care: Multi-modal data Access Platform” (ROADMAP) project’s Work Package 3 (WP3) “Identification, mapping and integration or RWE“ has submitted its first report, called “D3.1 Initial Overview of potential data sources with Real-World Evidence (RWE) data in Europe” to the Innovative Medicines Initiative (IMI). This is not the first project deliverable, but is the first deliverable for WP3 and constitutes an important milestone for the project.
The aim of ROADMAP is to deliver a series of data integration methods and tools for patient outcomes, developed and tested through pilot projects, which are scalable and transferable, and which will provide the foundation for a future Europe-wide RWE platform on Alzheimer’s disease (AD).
In this realm, WP 3 will address the challenges related to finding, extracting, harmonising, integrating and analysing data from RWE sources relevant to AD. The report contains information on the identification and characterisation of the data sources. This is crucial in order to create a landscape of available Real-World health care data. It is the first step to provide an understanding of currently available data for the relevant outcomes and outline potential gaps in currently available information about Alzheimer’s disease at various stages.
Since the landscape of data should be sustainable information that is available for the current ROADMAP objectives as well as future research on the various stages of Alzheimer’s disease it should be documented in an accessible data source catalogue with curation and search features. For that purpose, the existing EMIF AD and EMIF EHR catalogues were selected as the preferred repositories, (https://emif-catalogue.eu/) but at the same time taking into account the different fingerprinting needs for cohort type and EHR/national register type data.
Find the deliverable here: http://roadmap-alzheimer.org/downloads/deliverables/