PROMOT Network Meets in Paris 🇫🇷
- 3 days ago
- 3 min read
On January 19–20, 2026, the PROMOT Network convened for its in-person annual meeting at the Institut Imagine in Paris, France. Over two intensive days, partners from across Europe and Canada gathered—both in person and virtually—to review progress, tackle challenges, and align priorities for the year ahead. The meeting followed closely on the heels of the 291st ENMC International Workshop, creating a dynamic environment for collaboration and knowledge exchange within the broader neuromuscular disease community.
The meeting opened with a project overview and updates across all Work Packages (WPs), highlighting significant progress since the submission of PROMOT’s first Annual Progress Report in October 2025. Discussions emphasized cross-WP integration, ensuring that phenotyping, OMICs data, legal-ethical frameworks, outcome measures, and federated analytics evolve cohesively within PROMOT’s Master Observational Trial (MOT) infrastructure.
A Collaborative Milestone for the PROMOT Network
Rather than focusing solely on individual deliverables, the Paris meeting was designed to strengthen integration across the network. A key theme throughout both days was alignment—aligning data standards, aligning methodologies across countries, and aligning research priorities with patient needs.
Partners engaged in in-depth discussions on how to better connect biological data with clinical phenotypes, how to ensure that digital tools meaningfully capture patient experience, and how to prepare the project for evolving European health data regulations. The group also reflected on lessons learned from the first reporting period and identified practical strategies to streamline collaboration moving forward.
Dedicated discussion sessions allowed teams to explore how their work intersects, where dependencies exist, and how decisions in one area influence progress in another. These exchanges reinforced the importance of PROMOT’s federated architecture and its commitment to interoperability, sustainability, and scalability across international sites.
Patient Engagement and Knowledge Sharing
Patient engagement remained central to the meeting. Partners discussed approaches to translating complex scientific findings into clear, accessible formats for patients and families. Ideas included visual summaries, short videos, and interactive tools designed to answer the critical question: “What does this mean for me?”
The network reaffirmed its commitment to transparency and co-creation, with plans to actively involve patient partners in reviewing materials before broader dissemination.
Discussions also highlighted the importance of ensuring consistent, evidence-based messaging across countries, recognizing that patients increasingly access information internationally.
Strengthening Partnerships and Future Funding
The Paris meeting also provided space for strategic planning. Partners explored new funding opportunities, discussed approaches to generating preliminary data to support competitive grant applications, and considered potential expansion to additional diseases or data types.
Collaboration with related initiatives and registries was another important topic, with a shared goal of avoiding duplication, maximizing impact, and building sustainable infrastructures that extend beyond the life of a single grant cycle.
The in-person setting fostered productive brainstorming and strengthened relationships across institutions. Informal exchanges—during coffee breaks, the group photo session, and the team dinner—proved just as valuable as formal agenda items in building cohesion and shared vision.
Looking Ahead
The Paris meeting underscored PROMOT’s commitment to interdisciplinary collaboration—bridging clinical research, OMICs, digital health technologies, ontology engineering, federated analytics, and patient engagement.
Key priorities for the coming year include:
Finalizing and releasing PROMOT Ontology v1
Generating preliminary biomarker data to strengthen grant applications
Expanding cross-WP integration of OMICs and phenotypes
Advancing pediatric VPIT feasibility data
Pursuing new funding opportunities and planning the 2027 European meeting
As PROMOT continues to build a federated, ethically grounded, and patient-centered research infrastructure, the momentum generated in Paris marks an important milestone toward accelerating discoveries in rare neuromuscular diseases.
