The Patient Lifestyle and Disease Data Interactium (PaLaDIn), an ambitious Innovative Health Initiative (IHI) funded initiative (with contribution from The FSHD Society, TREAT-NMD and UK Research and Innovation (UKRI); totalling 21 million Euros), has this month been launched to drive innovative real world data collection from patients with rare neuromuscular diseases (NMDs). A new state-of-the-art data collection platform is being developed to transform how rare diseases are treated. Known as ‘The Interactium’, the platform 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. The project is expected to provide a major leap forward in integrating different sources of rare disease patient data, including Patient Reported Outcome Measures, patient preferences and data from registries and wearable devices. Researchers and medicines developers will have access to the data that clearly elicits patients’ preferences and needs, which is particularly important in rare diseases where outcome measures and patient preference data is scarce. This means that treatments and interventions are developed to meet the needs of patients, informing better decision-making in healthcare, medicines development and health technology assessments. “We at TREAT-NMD provide a global network of experts in neuromuscular diseases. The strength and expertise of our network, and all nine global partners working together to deliver the PaLaDIn project, means that we can collaborate to transform the NMD field. “The mission of this consortium of partners is to create a data platform that will help to pioneer effective treatments, delivering the best care for those living with NMD and other rare diseases across the world. “One of the biggest challenges we face in our field is the lack of patient data. PaLaDIn is designed to tackle exactly that challenge, working with patients, healthcare professionals and researchers to collate impactful data that can make a big difference in rare disease diagnosis and treatment.”- David Allison, CEO of TREAT-NMD Services Ltd PaLaDIn will advance knowledge in the rare disease field and address known bottlenecks and hurdles including lack of data from patients living with a rare disease, limited interoperability and reusability of data, low knowledge about diseases, disease heterogeneity, scarcity of PROMS, low numbers of patients. It is expected that, as a result of the PaLaDIn initiative there will be:• Up to 4000 patients worldwide who submit data to The Interactium• New frameworks to test the value of co-creation will be created• More effective and patient-centred health care solutions and research developed• Greater de-risking of trials for companies due to the availability of FAIR data• Development of PROMS, and digital tools to give insights on the burden of disease These expected outcomes will ultimately contribute to increased patient centricity and improved decision making, outcomes and healthcare solutions. The 9 partners are:Parent Project APS (Coordinator)- Rome, ITTREAT-NMD services Ltd (Scientific Coordinator) – Newcastle, UKNewcastle University- Newcastle, UKLudwig Maximillan University of Munich- Munich, DEDuchenne UK- London, UKUniversity of Amsterdam Medical Centre- Amsterdam, NLFSHD Society- Randolph, USAAparito BV – Leiden ,NLLeiden University Medical Centre- Leiden, NL Links:Website: https://www.project-paladin.eu/X: @eu_paladinLinked in: @eu-paladin 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]  Click here to view the full press release