A public-private partnership is building a single digital platform—the Interactium—that will pull together every type of patient data for people with neuromuscular diseases, from clinic records and wearable-device readings to patients’ own reports on how they feel. Currently, data about a patient’s condition is scattered across registries, doctor’s notes, fitness trackers, and survey forms, making it hard for clinicians, regulators, and drug developers to see the full picture. This fragmentation slows clinical-trial recruitment and delays decisions about which treatments work best. The Interactium aims to solve that by aligning all those data streams at the individual patient level, using FAIR (Findable, Accessible, Interoperable, Reusable) principles, and giving patients control over how their information is used. If successful, the platform could accelerate drug development and regulatory decisions for neuromuscular diseases, where ongoing trials and well-defined patient groups make it an ideal test case. The project will also produce standard operating procedures and a toolkit that could be scaled to other rare diseases and even common conditions such as diabetes. By creating a patient-centric, cost-effective data infrastructure, the Interactium could quietly reshape how health data flows from bedside to bench and back again.
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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
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