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For an overview and detailed insights into the work packages, visit our website where you will find comprehensive information, updates, and key highlights from the INTEGRATE-LMedC project.
WP1 – Project Management and Coordination, period 1
WP1, led by NTNU and supported by BBMRI-ERIC, has been assisting project partners with their tasks. In close cooperation with BBMRI-ERIC, the project management team guided consortium partners through the reporting process and submitted the report on time, by August 31, 2025.
WP2 – Outreach, period 1
WP2 successfully concluded in June 2025. The communications team continued to publish articles and social media updates from the project: Twitter/X, LinkedIn and Bluesky, as well as curating this biannual newsletter. The focus has been on telling stories about the core activities carried out in all other WPs, in line with the Dissemination and Communication Strategy Plan. We also sought additional opportunities to World Health Day, when we connected challenges for research on Endometriosis with the potential of large medical cohorts to address unmet research needs.
WP2 delivered Deliverable 2.2 – Impact Monitoring, Period 1, which provides an overview of the outreach and dissemination activities carried out during period one (M1–M18) of the project, summarising actions taken to raise awareness, engage stakeholders and promote project results. WP2 also delivered Deliverable 2.3 – Engagement Report, Period 1, which presents the stakeholder engagement activities from January 2024 to June 2025, outlining engagement objectives, targeted stakeholder groups, activities undertaken, outcomes achieved and planned next steps to support ongoing collaboration.
To promote collaboration and ensure cohesive, effective communication strategies, WP2 organised two communication meetings in partnership with other project members.
WP4 – The current European RI-landscape
WP4 started its activities during month 13. It focused on mapping European and selected international research infrastructures that provide services to large medical cohorts. Led by ECRIN, Task 4.1 provided a detailed overview of the services, tools and capacities offered across the entire research-data lifecycle, from study design and governance to long-term data exploitation. The mapping included among others, ESFRI/ERIC infrastructures, national cohort infrastructures, multinational initiatives and biobanks. Deliverable 4.1, “Mapping of Available, Infrastructure Services for Large Medical Cohorts”, presents the results of a survey and follow-up interviews with 25 organisations, identifying five major service clusters: 1) Data Services, 2) Regulatory and Ethical Support, 3) Methodology and Design, 4) Biobanking and OMICS and 5) Operational Support and Coordination. The analysis highlighted both strengths and gaps – for instance, while most organisations interviewed provide data-centric services, only a few support cohort registration or day-to-day study conduct.
Task 4.2, led by BBMRI-ERIC, captured the perspective of users through interviews with researchers and cohort operators. Its output, Milestone 4.1, was completed in July and highlights the diverse and fragmented use of infrastructure services across Europe, identifying persistent challenges such as regulatory complexity, limited in-house expertise and financial constraints.
Together, Deliverable 4.1 and Milestone 4.1 provide a solid evidence base for the next stage of WP4, which will include a gap analysis comparing existing service offers with user needs, a workshop involving multiple stakeholders planned before the end of November and a literature review to inform recommendations for strengthening infrastructure support for large medical cohorts. You can read a detailed update on the INTEGRATE-LMedC website.
WP12 – Data harmonisation: demonstrator analyses
WP12 activities started in month 13. WP12 aims at harmonising patient level data from multiple cohorts by enabling cohorts to map their data dictionaries onto the common metadata models developed in work package 11. It will also provide FAIR documentation of the mapping procedures to streamline variable harmonisation in the future. Work will result in a demonstrator for a remote multi-cohort data analysis framework which is federated and privacy preserving.
The output from WP12 will be used by WP13 to conduct sound science cases on data from large scale observational, longitudinal population-based cohorts.
WP15 – Policy for Cohort Access and Secondary Data Use
WP15 activities started in month 13. The main objective is to develop guiding principles for how to make cohort resources as widely useful as possible to the research community, whilst considering ELSI issues. This will include the development of guiding principles for cohort access policies for primary studies and secondary data use and a concept for data protection policy.
Supporting this is a need to understand how large medical cohorts currently manage access to their resources and protection of their data. The idea is not to start from scratch, but to base work on real-life examples. This includes existing relevant policies and direct contact with the large medical cohorts identified in WP3; analysis using two structured extraction forms: one focused on data access and the other on data protection and then sorting information into final themes and subthemes.
Based on the activities mentioned above, WP15 successfully submitted milestones 9 and 10 on July 31st, 2025. You can read a detailed update on the INTEGRATE-LMedC website.
These are the current activities. If you are interested in getting involved, please contact us at hello@integratelmc.eu.
Stay connected and keep up with all the latest project updates by following us on our social media channels (Bluesky, Twitter/X, LinkedIn).
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