Patient Lifestyle and Disease Data Interactium

患者生活方式和疾病数据交互

• 批准号: 10083579
• 金额: $ 743.46万
• 依托单位: TREAT-NMD SERVICES LTD
• 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=10083579
• 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

神经肌肉疾病处于从患者那里收集真实人口统计和临床相关数据的前沿，PaLaDIn 是一家公私合作伙伴，将利用 TREAT-NMD 的全球注册平台来支持临床试验计划/招募以及临床试验。凭借其他合作伙伴在患者参与和 FAIR 数据方面的专业知识，这一公私合作伙伴关系将开发 Interactium，这是一种新的患者数据综合方法。与患者报告的结果/体验测量和其他数据（例如可穿戴设备和物联网设备）共享整理的整体数据，以改善结果和决策，并加速一系列利益相关者（患者、监管机构、行业和倡议）的创新PaLaDIn 的其他目标： • 开发患者界面来收集患者偏好，以支持包容性方法，并允许数据可视化和控制其使用。 • 提供一流的工具来支持所有阶段。神经肌肉领域转化研究、护理和诊断的决策，并制定标准操作程序，以允许在罕见疾病和更广泛的健康领域使用。 • 提供神经肌肉疾病领域之外的交流和共享学习，以支持规模化开发。开发以患者为中心且具有成本效益的先进综合医疗保健解决方案需要明确定义的大量但可管理的患者群体、广泛的持续研究和试验以及处于各个开发阶段的药物。然而，这些； Interactium 及相关流程和框架具有更广泛的潜力，该系统可以从任何相关来源获取数据，在患者层面调整数据，并提供数据分析以支持患者、民众、监管机构和健康相关行业的决策。与糖尿病等更常见的疾病同样相关 • 灵活的 Interactium 全向数据平台 • 改善用户体验的架构/模板 • 可穿戴基础设施的架构 • 公平化流程的新方法 • 罕见病患者组织的工具包。