Launch of new IHI funded project to accelerate the development of effective treatments and care for neuromuscular and rare diseases
The Patient Lifestyle and Disease Data Interactium (PaLaDIn), an ambitious Innovative Health Initiative (IHI) funded consortium, (with contribution from The FSHD Society, TREAT-NMD and UK Research Innovation (UKRI); totalling 21 million Euros), was launched on 1st January 2024 to drive innovative real world data collection from patients with rare neuromuscular diseases (NMDs). This project aims to develop and implement an innovative global, patient centric, data platform to accelerate the development of effective treatments and care for neuromuscular and other rare diseases.
The consortium is a collaboration between academic, SME and patient organisations that includes 9 partners from 5 countries. The four-year project brings together key stakeholders with expertise in NMDs, patient advocacy and data science. It presents a unique opportunity to build capacity for the use of patient data from patients with rare NMDs, to ensure their voices are heard in the planning of care, research and throughout the drug development lifecycle.
A new state-of-the-art data collection platform is being developed within the consortium to transform how rare diseases are treated. Known as “The Interactium”, it will provide insights to accelerate novel drug development; improve patient reported outcome measures (PROMS) and inform health care decision making at all levels. The learnings from the project will be shared with those working in other rare disease areas via a series of tools and training materials.
For more information, click here to read the press release
