D3.4 Final report on proof of concept technical solutions for RWE data harmonisation and integration

WP3 facilitated the work of WPs 2, 4 and 5 by identifying and providing access to relevant data sources for answering the research questions defined within ROADMAP. WP3 has developed a preliminary workflow to achieve this. After approval by the WP leads, ROADMAP researchers were required to fill in a specifically developed scientific research question form. This was sent to WP3, which then triggered the search for relevant data in all ROADMAP partner platforms. Fast access to data is possible where the data have already been uploaded to one of the platforms and data owners have given their permission.. Researchers can also identify datasets that are not yet included in one of the partner platforms. In this case, the data owner will be approached and asked for participation in the study.
Eight use cases have been identified and this report shows how WP3 has made use of the existing partner infrastructures in ROADMAP to identify relevant sources. Data for the validation of the preclinical model, developed by Novartis, were identified from within EMIF AD and DPUK. EMIF AD has additionally approached cohorts that were identified as potentially interesting by WP4. Data for the validation of the model of cognitive decline in people with AD were identified by EMIF EHR, EMIF- AD and DPUK. The dementia diagnosis validation study makes use of the SIDIAP database, while a pilot study for the estimation of the costs of dementia identified six cohorts from EMIF AD. ROADMAP partners VUMC and RUG additionally worked on the feasibility of using mobile phone applications for people with AD to collect information on social communication and social exploratory measures. For the use case regarding the validation of the time to institutionalization model, two data sources were identified through the EMIF-AD Catalogue and additional literature searches. Access to these sources was obtained and analyses are currently being conducted. For the quality of life use case, suitable cohorts in the EMIF-AD and DPUK Catalogues were identified, and another data source was successfully accessed. For the Danish dementia trajectories use case, the identification of suitable EHR data sources is still ongoing. Finally, for the use case investigating transitions between different types of care, common care trajectories, and durations of different care types within trajectories of persons with dementia in the Netherlands, data from three Dutch healthcare registries were combined. These analyses are ongoing, but will be finished by the end of the ROADMAP project.