Descripción del proyecto
Un método innovador para la integración de datos de pacientes con enfermedades neuromusculares
Los trastornos neuromusculares afectan aproximadamente a una de cada mil personas en todo el mundo. El equipo del proyecto PaLaDIn, financiado con fondos europeos, impulsará la recopilación innovadora de datos de la vida real de pacientes con enfermedades neuromusculares raras. El consorcio desarrollará una plataforma puntera de recopilación de datos denominada «The Interactium», que proporcionará información para acelerar el desarrollo de fármacos, mejorar las medidas de resultados comunicados por los pacientes (PROM, por sus siglas en inglés) y fundamentar la toma de decisiones sanitarias a todos los niveles. En el proyecto se integrarán fuentes de datos de pacientes, incluidos registros, PROM y preferencias de los pacientes. Los desarrolladores de fármacos tendrán acceso a datos que indiquen las preferencias y necesidades de los pacientes; esto es de gran importancia en las enfermedades raras, donde los datos de los pacientes son escasos. Los resultados de la plataforma de datos se compartirán con quienes trabajan en otras áreas de enfermedades raras mediante una serie de herramientas y materiales de formación.
Objetivo
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
Ámbito científico
Palabras clave
Programa(s)
- HORIZON.2.1 - Health Main Programme
- HORIZON.2.1.7 - Innovative Health Initiative
Convocatoria de propuestas
HORIZON-JU-IHI-2022-03-single-stage
Consulte otros proyectos de esta convocatoriaRégimen de financiación
HORIZON-JU-RIA - HORIZON JU Research and Innovation ActionsCoordinador
00165 Roma
Italia