Descrizione del progetto
Un approccio innovativo per l’integrazione dei dati dei pazienti affetti da malattie neuromuscolari
I disturbi neuromuscolari colpiscono circa una persona su 1.000 in tutto il mondo. Il progetto PaLaDIn, finanziato dall’UE, promuoverà la raccolta di dati innovativi dal mondo reale relativi a pazienti affetti da rare malattie neuromuscolari. Il consorzio svilupperà una piattaforma all’avanguardia per la raccolta dei dati, chiamata «Interactium», che fornirà informazioni per accelerare lo sviluppo dei farmaci, migliorare gli esiti riferiti dai pazienti (PROM, patient reported outcome measure) e informare i processi decisionali in ambito sanitario a tutti i livelli. Il progetto integrerà le fonti di dati dei pazienti, compresi i relativi registri, PROM e preferenze. Gli sviluppatori di farmaci avranno accesso a dati che indicano le preferenze e le esigenze dei pazienti, il che risulta di grande importanza nel caso delle malattie rare, caratterizzate da scarsità di dati su di essi. I risultati ricavati grazie alla piattaforma di dati saranno condivisi con i soggetti che lavorano nell’ambito di altre aree patologiche rare attraverso una serie di strumenti e materiali di formazione.
Obiettivo
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 groups in 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
Campo scientifico
Parole chiave
Programma(i)
- HORIZON.2.1 - Health Main Programme
- HORIZON.2.1.7 - Innovative Health Initiative
Invito a presentare proposte
HORIZON-JU-IHI-2022-03-single-stage
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HORIZON-JU-RIA - HORIZON JU Research and Innovation ActionsCoordinatore
00165 Roma
Italia