Patient Lifestyle and Disease Data Interactium (PaLaDIn)

患者生活方式和疾病数据交互 (PaLaDIn)

• 批准号: 10105921
• 金额: $ 163.26万
• 依托单位: NEWCASTLE UNIVERSITY
• 依托单位国家: 英国
• 项目类别: EU-Funded
• 财政年份: 2024
• 资助国家: 英国
• 起止时间: 2024 至 无数据
• 项目状态: 未结题
• 来源: https://gtr.ukri.org/projects?ref=10105921
• 关键词: Patient; Lifestyle; Disease; Data; Interactium

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.

神经肌肉疾病是从患者那里收集现实世界中的人口统计学和临床​​上的数据的最前沿。 Paladin是一种公共私人合作伙伴关系，将利用Treat-NMD的全球注册表平台。这使用患者数据来支持临床试验计划/招聘以及更复杂的调节器驱动研究。凭借其他合作伙伴在患者参与和公平数据方面的专业知识，这是一种公有的私人伙伴关系，将开发Interactium，这是一种新的，综合的患者数据方法。 Interactium将使注册表报告的数据与患者报告的结果/经验指标和其他数据（例如可穿戴设备和事物互联网设备）相结合，并共享协作的整体数据，以改善成果和决策，并加快各种利益相关者（患者，行业，行业，行业，行业，行业，企业，企业，企业，darwin）的创新。圣骑士的其他对象：•开发患者界面以收集患者偏好以支持包容性方法，并允许可视化数据并控制其使用。 •提供班级领先的工具，以支持整个神经肌肉领域的翻译研究，护理和诊断中的决策阶段，并开发标准操作程序，以允许在罕见疾病和广泛的健康领域中利用。 •在神经肌肉疾病领域提供沟通和共享学习，以支持所有疾病中类似系统和能力的扩大发展。开发以患者为中心且具有成本效益的高级综合医疗解决方案需要明显但可管理的数字，在各个发展阶段进行广泛的研究以及持续的研究以及广泛的试验和药物。神经肌肉疾病提供了所有这些；但是，相互作用和相关的过程和框架具有更大的潜力。系统圣匹钥匙可交付成果•灵活的互动Omni数据平台•用于改进的用户体验的体系结构/模板•用于可穿戴基础设施的体系结构•公平过程的新方法•用于罕见病患者组织的工具包。