The Patient Lifestyle and Disease Data Interactium (PaLaDIn), is an ambitious Innovative Health Initiative (IHI) funded initiative which launched on 1st January 2024. PaLaDIn will develop and implement an innovative data collection platform to accelerate the development of effective treatments and patient care, enhance healthcare decision-making and improve patient outcomes.
PaLaDIn is committed to enhancing healthcare outcomes for individuals with neuromuscular and other rare diseases through the development of ‘The Interactium,’ a global, patient-centric data platform. By gathering comprehensive patient data on health status and experiences, we ensure that patients’ voices are integral to healthcare decision-making. Our platform aims to accelerate the development of effective treatments, improve patient-reported outcome measures (PROMs), and inform healthcare decisions. Ultimately, we strive to share our insights and tools to benefit other rare diseases, empowering patients and advancing better healthcare outcomes.
Four use cases have been identified to test and improve the Interactium use of rare NMD patient data, these are follows:
1.Use patient data to inform regulatory decision making.
2.Monitor patient care.
3.Create standards of care guidelines based on patient data.
4.Facilitate successful clinical trials.
The learnings from the project will be shared with those working in other rare disease area via a series of tools, workshops, and training materials.
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 has received funding from UK Research and Innovation (UKRI) under the UK government’s Horizon Europe funding guarantee [grant numbers 10105921, 10103989, and 10083579]