1 October 2026
Six months into the PaLaDIn Project, FSHD Europe’s contribution to Work Package 9 is progressing well and remains on track. Funded by the Innovative Health Initiative (IHI), PaLaDIn—Patient Lifestyle and Disease Data Interactium—is developing an Interactium®, a patient-centred real-world data platform for neuromuscular diseases (NMD).
FSHD Europe is supporting this work as a subcontractor through TREAT-NMD, alongside Work Package 9 lead FSHD Society. This work is aligned with Project Mercury in addressing an important challenge: as promising FSHD therapies move closer to approval, stronger health-economic evidence and robust disease-progression models will be essential to support timely reimbursement decisions and patient access.
Progress across three key areas
During the first six months, our work has advanced across three connected areas:
- Disease progression modelling: Together with the Institute for Medical Technology Assessment (iMTA), FSHD Europe is contributing to a model that captures variation in disease progression, helps predict outcomes and supports more efficient clinical development.
- Patient journey mapping: In partnership with Bern University of Applied Sciences, the team is mapping the patient journey across different countries in Europe to identify real-world needs, gaps in care and barriers.
- Practical toolkits: The insights will inform a Patient Support Toolkit and an HTA Toolkit for national patient organisations, helping translate evidence into practical support and advocacy.
FSHD is serving as the case study, with methods and resources designed to be scaled efficiently to other neuromuscular diseases. With activities moving forward as planned, the project is well positioned for its next phase, with another year to go before it concludes in October 2027.
