Translation and Clinical Implementation of a Test of Language and Short-term Memory (STM) in Aphasia: The CORE-APHASIA Collaboratory: Advancing Robust Data Science & Sharing (CARDS)

项目摘要 失语症是一种语言障碍，影响言语的产生或理解以及 由于中风、头部创伤或其他神经系统疾病对左半球造成的损害而导致的读写 条件失语症影响口语和/或书面语言处理的任何方面（例如，理解，词 而这一点，也可以从轻微到严重。失语症中的语言障碍通常会产生严重的不利影响， 对个人生活质量的影响。现有的失语症研究工作已经导致了广泛的措施， 干预和由此产生的数据集，产生更精确的诊断和精细的针对性治疗计划。一 在诊断精确度和治疗特异性方面急需的这一进展的结果是， 单一病例和病例系列研究的优势不足，测量结果几乎不一致，或 跨组治疗内容和多个数据集缺乏标准化和互操作性， 开放获取和长期可持续性机制。因此，迫切需要一种技术 支持数据标准化和聚合的基础设施，以及失语症研究人员之间的合作。 我们已经开发了核心失语症，一个生物医学数据库，知识库，和“合作实验室”使用 这是一个开放科学平台，获得了NIH数据科学战略办公室（ODSS）的奖励。核心失语症 依赖于基于云的开放科学资源，是及时和补充的父母补助金的目标 支持开发失语症的临床诊断工具，Temple语言评估， 失语症的短期记忆（TALSA）。该项目符合NIH的数据战略计划 科学，旨在进一步推进失语症研究人员的数据生态系统，重点是确保公平- 性（可查找、可解释、可互操作和可重用）和可信性（透明度， 责任、用户关注、可持续性和技术）。对于这个项目，我们的 主要研究目标是将公平和信任的原则和过程纳入我们现有的 核心失语症生物医学数据库和“合作实验室”。作为这项工作的一部分，我们将评估和 增加我们的核心失语症数据资源的一致性，以优化其对失语症研究的影响 社区我们的具体目标是：1）实现数据存储库的理想特性，包括 标准化的数据词汇表; 2）使用3个方面建立CORE-TALSA数据存储库的公平性 公平的标准方法和工具; 3）建立可信度。我们最后的成果将是 改进的更成熟的数据存储库，具有适当的指标和流程系统，以增强数据 共享、访问和互操作性;增加数据资源的使用、效用、可持续性和影响，以及 根据公平原则，提高捕获、管理、验证、存储和分析临床数据的能力 和可信度。

PROJECT SUMMARY Aphasia is an impairment of language, affecting the production or comprehension of speech and the ability to read or write resulting from damage to the left hemisphere from stroke, head trauma or other neurological conditions. Aphasia affects any aspect of spoken and/or written language processing (e.g., comprehension, word retrieval) and can range from mild to severe. Language impairments in aphasia often have profound adverse effects on the individual's quality of life. Existing research efforts in aphasia have led to a wide range of measures, interventions and resultant datasets that yield more precise diagnoses and finely targeted treatment plans. A consequence of this much needed gain in diagnostic precision and treatment specificity has been a preponderance of underpowered single case and case series studies with little consistency of measurements or treatment content across groups, and multiple datasets that lack standardization and interoperability with limited mechanisms for open access and long-term sustainability. Thus, there is a critical need, for a technological infrastructure to support data standardization and aggregation, and collaboration amongst aphasia researchers. We have developed CORE-APHASIA, a biomedical database, knowledge repository, and “collaboratory” using an open-science platform with an award from the NIH Office of Data Science Strategy (ODSS). CORE-APHASIA relies on cloud-based open science resource and is timely and complementary to the goals of the parent grant that supports development of a clinical diagnostic tool for aphasia, the Temple Assessment of Language and Short-term memory in Aphasia (TALSA). This proposed project is aligned with NIH's strategic plan for data science, and aims to further advance the data ecosystem for aphasia researchers with a focus on ensuring FAIR- ness (Findable, Accessible, Interoperable, and Reusable) and TRUST-worthiness (Transparency, Responsibility, User Focus, Sustainability, and Technology) of CORE-APHASIA. For this proposed project, our primary research objective is to incorporate the FAIR and TRUST principles and processes within our exiting CORE-APHASIA biomedical data repository and “Collaboratory”. As part of this effort, we will assess and increase the alignment of our CORE-APHASIA data resource to optimize it's impact on the aphasia research community. Our specific aims are 1) achievement of desirable characteristics for data repositories including standardized data vocabularies; 2) establish FAIR-ness of the CORE-TALSA data repository using the 3 prong FAIR-ify standard approach and tools; and 3) establish TRUST-worthiness. Our final deliverable will be an improved more mature data repository that has a system of metrics and processes in place to enhance data sharing, access, and interoperability; increase usage, utility, sustainability and impact of the data resource, and to improve the ability to capture, curate, validate, store, and analyze clinical data in accordance with FAIR-ness and TRUST-worthiness.