A Model Integrated Data Management System for Multi-Disciplinary Autism Research

多学科自闭症研究模型集成数据管理系统

• 批准号: 8598112
• 负责人: LEON ROZENBLIT
• 金额: $ 34.87万
• 依托单位: PROMETHEUS RESEARCH, LLC
• 依托单位国家: 美国
• 财政年份: 2012
• 资助国家: 美国
• 起止时间: 2012-12-13 至 2014-11-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8598112
• 关键词: Acute; Address; Adoption; Advocacy; Area; Attention; Autistic Disorder; Behavioral; Build-it; Code; Communities; Computer software; Copyright; Data; Databases; Development; Disease; Ecology; Electroencephalography; Emergency Situation; Environment; Evaluation; Feedback; Freedom; Genomics; Goals; Human; Image; Individual; Interdisciplinary Study; Investments; Leadership; Licensing; Mental Health; Mental disorders; Modeling; Modification; Neurodevelopmental Disorder; Ownership; Participant; Phenotype; Process; Research; Research Personnel; Resources; Secure; Site; Solutions; Source Code; System; Technology; Time; Work; base; cost; data exchange; data management; empowered; experience; flexibility; meetings; novel; open source; programs; public health relevance; repository; software development

DESCRIPTION (provided by applicant): The overarching aim of the proposed project is to empower autism investigators to (1) make more effective use of data locally and (2) more efficiently exchange data with the scientific community. This will be achieved by delivering an open-source integrated data management platform for interdisciplinary autism research programs. Ineffective data management practices hinder interdisciplinary research on disorders like autism. This challenge can be met by organizing research data in an integrated data management system that makes consistently clean data from multiple studies and multiple data-types available to rapidly answer research questions. Investment in an integrated data management system also simplifies exchange of data with collaborators by enforcing curation standards. Unfortunately, existing technologies do not support the need to maintain integrated data management systems in dynamic research environments. One technology, the Research Exchange Database (RexDB), is very close, but is missing some important features. To close the gap, this project will (a) enhance RexDB to be configurable by users (investigators and their staff), (b) release it under an open-source license so that anyone can freely use, modify, and distribute the software (achievable because the project team holds the copyright on the proprietary components), and (c) re-architect some of the components so that they are more modular, and easier to modify by third-party developers who wish to extend the functionality of the platform. To achieve the overarching aim, the project will pursue five Specific Aims: (1) Define what features users need by engaging with stakeholders at four evaluation sites to clearly define software requirements; (2) Deliver software that empowers users to (a) configure a robust data management system and to (b) use third-party developers to enhance the code-base; (3) Evaluate the platform's ability to support effective data management and exchange by soliciting regular stakeholder feedback from each of four evaluation sites, and address major gaps via an agile, iterative software development process; (4) Enable free use, distribution, and modification of the platform by making all components available under an appropriate open-source license; (5) Encourage broad adoption of the platform and emergence of better practices for data curation and exchange by actively promoting a vibrant user-developer ecology.

描述（由申请人提供）：拟议项目的总体目的是使自闭症调查人员能够（1）更有效地在本地使用数据，以及（2）更有效地与科学界交换数据。这将通过为跨学科自闭症研究计划提供开源的集成数据管理平台来实现。无效的数据管理实践阻碍了对自闭症等疾病的跨学科研究。可以通过在综合数据管理系统中组织研究数据来应对这一挑战，该数据使得从多个研究和多个数据类型中始终如一地清洁数据，以快速回答研究问题。对综合数据管理系统的投资还可以通过执行策划标准来简化与合作者的数据交换。不幸的是，现有技术不支持在动态研究环境中维护集成数据管理系统的需求。一项技术（REXDB）技术非常接近，但缺少一些重要功能。要缩小差距，该项目将（a）增强用户（调查人员及其员工）可配置的REXDB，（b）在开源许可下发布它，以便任何人都可以自由使用，修改和分发软件（可以实现的软件（因为项目团队都可以在本体组件上持有版权，以更轻松的组件，以及（c）更加改进的组合，以及（c），以及c的组合，以及他们的组合，以及他们的组合，以及他们的组合，以及他们的组合，以及他们的组合，以及c的组合。希望扩展平台功能的第三方开发人员。 为了实现总体目标，该项目将追求五个具体目标：（1）通过与四个评估网站上的利益相关者互动以清楚地定义软件要求来定义用户需求的特征； （2）交付软件，使用户能够（a）配置强大的数据管理系统，并使用（b）使用第三方开发人员来增强代码库； （3）评估平台通过从四个评估站点中的每一个征集普通利益相关者的反馈，并通过敏捷的迭代软件开发过程来解决主要差距，从而评估平台支持有效数据管理和交换的能力； （4）通过使所有组件可在适当的开源许可下可用，启用平台的自由使用，分发和修改； （5）通过积极促进充满活力的用户开发者的生态来，鼓励广泛采用平台，并出现更好的数据策划和交换。