Patient Lifestyle and Disease Data Interactium (PaLaDIn)

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Neuromuscular disease is at the forefront of collecting real-world demographic and clinically-relevant data from patients. PaLaDIn, a public private partnership, will leverage TREAT-NMD's Global Registry Platform. This uses patient data to support clinical trial planning/ recruitment as well as more complex regulator-driven studies. With other Partners’ expertise in patient engagement and FAIR data, this a public private partnership, will develop the Interactium, a new, integrated approach to patient data. The Interactium will align registry-reported data with Patient Reported Outcome/Experience Measures and other data e.g., wearables and Internet of Things devices, and share the collated, holistic data to improve outcomes and decision-making, and accelerate innovation for a range of stakeholders (patients, regulators, industry and initiatives like DARWIN). PaLaDIn’s other objectives: • Develop a patient interface to collect patient preferences to support an inclusive approach, and to allow visualization of data and control over its use. • Provide class-leading tools to support all stages of decision-making in translational research, care and diagnosis across the neuromuscular field and develop Standard Operating Procedures to allow utilization across the rare disease and wider health fields. • To provide communications and shared learning outside the neuromuscular disease field to support scale-up development of similar systems and capabilities across all diseases. Developing a patient-centric and cost-effective advanced integrated healthcare solution requires well defined patient groupsin significant, but manageable numbers, extensive ongoing research and trials and drugs at all stages of development. Neuromuscular diseases provides all of these; however, the Interactium and associated processes and frameworks have much wider potential. A system that can ingest data from any relevant source, align that data at patient level, and provide data analysis to support decision-making by patients, clinicians, regulators and health-related industries is equally relevant to more common diseases such as diabetes. PaLaDIn key deliverables • Flexible Interactium omni data platform • Architecture/template for an improved user experience • Architecture for wearable infrastructure • Novel methods for FAIRification process • Toolkit for rare disease patient organisations