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

描述（由申请人提供）：拟议项目的总体目标是使自闭症研究者能够(1)更有效地使用本地数据，(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项目提供一个开源的综合数据管理平台来实现。无效的数据管理做法阻碍了对自闭症等疾病的跨学科研究。这一挑战可以通过在集成数据管理系统中组织研究数据来解决，该系统可以提供来自多个研究和多种数据类型的一致的干净数据，以快速回答研究问题。对集成数据管理系统的投资还通过执行管理标准简化了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要。研究交换数据库（RexDB）是一种非常接近的技术，但是缺少一些重要的特性。为了缩小差距，该项目将(a)增强RexDB，使其可由用户（调查人员及其员工）配置，(b)在开源许可下发布，以便任何人都可以自由使用、修改和分发软件（这是可以实现的，因为项目团队拥有专有组件的版权），以及(c)重新构建一些组件，使它们更加模块化，并且更容易被希望扩展平台功能的第三方开发人员修改。为了达到总体目标，项目将追求五个具体目标：(1)通过与四个评估站点的利益相关者合作，明确定义软件需求，从而定义用户需要哪些功能；(2)提供软件，使用户能够(a)配置强大的数据管理系统，以及(b)使用第三方开发人员来增强代码库；(3)通过从四个评估站点中征求利益相关方的定期反馈，评估平台支持有效数据管理和交换的能力，并通过敏捷、迭代的软件开发过程解决主要差距；(4)通过在适当的开源许可下提供所有组件，实现平台的自由使用、分发和修改；(5)通过积极促进充满活力的用户-开发者生态，鼓励广泛采用平台，并出现更好的数据管理和交换实践。

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.