To accelerate the development of effective treatments and to establish best practice diagnosis and care for NMD patients worldwide by harnessing patient input and patient-generated health data to improve decision making, outcomes and healthcare solutions.
To operate a collaborative, inclusive system that collects patient-reported outcome and experience measures, and aligns these with clinical data to advance treatments, diagnosis, and care by providing holistic, patient-level data.
This project is supported by the Innovative Health Initiative Joint Undertaking (IHI JU) under grant agreement No 101132943. The JU receives support from the European Union’s Horizon Europe research and innovation programme, COCIR, EFPIA, EuropaBio, MedTech Europe, Vaccines Europe (and the FSHD Society and TREAT-NMD Services Ltd as contributing partners participating in the project). The project will also receive funding from UK Research and Innovation (UKRI) under the UK government’s Horizon Europe funding guarantee [grant numbers 10105921, 10103989, and 10083579]