Patient Lifestyle and Disease Data Interactium (PaLaDIn)

神经肌肉疾病是从患者那里收集真实世界人口统计和临床相关数据的前沿。Paladin是一家公私合作伙伴关系，将利用Treat-NMD的全球注册平台。它使用患者数据来支持临床试验计划/招募以及更复杂的调节器驱动的研究。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，这是一个公私合作伙伴关系，将开发Interactium，这是一种新的、集成的患者数据处理方法。Interactium将使登记报告的数据与患者报告的结果/体验衡量标准和其他数据(如可穿戴设备和物联网设备)保持一致，并共享整理的整体数据，以改善结果和决策，并加快一系列利益相关者(患者、监管机构、行业和达尔文等计划)的创新。Paladin的其他目标：·开发一个患者界面，以收集患者的偏好，以支持包容性方法，并允许可视化数据和控制其使用。·提供一流的工具，以支持神经肌肉领域的转化性研究、护理和诊断的所有决策阶段，并开发标准操作程序，以允许在罕见疾病和更广泛的健康领域使用。·在神经肌肉疾病领域之外提供交流和共享学习，以支持在所有疾病中扩大类似系统和能力的发展。开发以患者为中心且具有成本效益的先进集成医疗解决方案需要定义明确的患者群体，包括数量可观但可管理的数量、广泛的正在进行的研究和试验以及处于开发各个阶段的药物。神经肌肉疾病提供了所有这些；然而，交互作用和相关的过程和框架具有更广泛的潜力。一个可以从任何相关来源获取数据、在患者层面对齐数据并提供数据分析以支持患者、临床医生、监管机构和健康相关行业决策的系统，与糖尿病等更常见的疾病同样相关。Paladin关键交付成果·灵活的Interactium全方位数据平台·改进用户体验的架构/模板·可穿戴基础设施架构·FAIR流程的新方法·罕见疾病患者组织的工具包

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