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Project overview
The project was officially launched during a kick-off event held in Trondheim, Norway, on April 8, 2024. 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.
WP2 – Outreach, period 1
One of the first actions of WP2 was conducting a stakeholder analysis. This involved a comprehensive stakeholder mapping initiative, which identified key groups, including scientists, research consortia, policymakers, funding bodies, industry representatives, health organisations, patient advocacy groups, experts in the humanities and social sciences, and citizens. This process was essential for understanding their communication needs and fostering active and sustainable engagement throughout the project.
Following the stakeholder analysis, we developed a Dissemination and Communication Strategy Plan (DCSP). This plan outlined all communication and dissemination activities for the project’s duration, tailored to the diverse stakeholder groups and the specific objectives of the communication and dissemination measures.
Our efforts also included designing the project logo, developing the project website, and establishing social media channels (Twitter/X, LinkedIn, and Bluesky), as well as launching this biannual newsletter. Project updates and outputs were shared through various communication channels, including the project website, social media platforms, and the newsletter.
To promote collaboration and ensure cohesive, effective communication strategies, we organised two communication meetings in partnership with other project members.
WP3 – Large Medical Cohorts
The initial step of WP3 involved defining the scope and criteria for large medical cohorts, as outlined below:
A medical cohort refers to a group of individuals with a shared condition, characteristic of exposure who might be followed over time to collect extensive health-related data and/or biological materials for current and future health research. The data and biological materials collected from a medical cohort are stored as databank and/or biobank collections. In this project, we neither consider interventional clinical trials nor databanks based on health registries without specific follow-up as medical cohorts. We consider a medical cohort as “large”:
- A clinical cohort (observational) comprising over 1,000 participants selected for a health condition; or
- A rare disease cohort comprising over 0,5-1% (as a rough guideline) of the total disease population of the country; or
- A population cohort comprising over 10,000 participants.
To identify unmet medical needs and opportunities for improving care, a two-round Delphi study was conducted. Initially targeting 100 experts, the study engaged 70 experts in total, with 43 responding to the first round and 68 completing the second round.
Building on the Delphi study findings, Nominal Interviews were conducted with 20 of the 70 experts, distributed across Europe. The diseases identified as priority areas of unmet medical need are:
- Depression
- Alzheimer’s Disease
- Endometriosis
A Scoping Review is currently underway to map the existing large medical cohorts that focus on these diseases.
The findings from this process will inform the development of a deliverable(D3.1),aimed at guiding decision-making and research efforts, as well as supporting the establishment of next-generation research infrastructure.
WP6 – ELSI, FAIR and fairness
In the second six months of the project, WP6 focused on the concepts and strategies for innovative participant and researcher engagement across Europe. This was via a detailed literature review that included the outcomes of many published studies, their engagement strategies and relative success outputs. Several distinct strategies were identified, and ongoing work investigates their contextual implementation. The results of this work will be drafted into deliverable D6.2, they will be made public and will inform the overall recommendations for Large Medical Cohorts (LMedC) for the sustainability and suitability of engagement strategies in future research infrastructures (RIs).
Thus, at the end of the first 12 months of INTEGRATE LMedC, WP6 has managed successfully to characterise the guidelines for assessing LMedC from ELSI and FAIR perspectives, and to identify the strategies involved in engaging participants and researchers working with LMedC across Europe. This affords the next WPs a solid foundation upon which future recommendations can be informed and designed.
WP9 – Data stewardship and sharing models
WP9 is working on finalising D9.1 (Report: Methods for data sharing models: report on IT technologies and architecture for data sharing) and MS9.1 (federated analysis pipeline proof of concept).
WP11 – Data harmonisation: FAIR catalogue
WP11 has been working on the Integrate LMedC Catalogue. This catalogue highlights large medical cohorts in Europe, with a listing of 68 cohorts from the UMCG at launch. However, we invite INTEGRATE LMedC partners to contact the UMCG MOLGENIS team to contribute information from other cohorts to the catalogue, in order to improve their own visibility and to further enhance the FAIRness of the INTEGRATE LMedC catalogue.
The catalogue is built using the MOLGENIS platform with contributions from the WP11 partners to define the initial set of metadata and is based on existing catalogues such as the BBMRI-ERIC Directory and the MOLGENIS Data Catalogue.
This first version of the catalogue will be discussed in the Deliverable D11.1, but we will continue to maintain and enhance the catalogue during the project and beyond and we will actively solicit feedback from the partners on the metadata items in the catalogue.
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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