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

描述(由申请人提供)：拟议项目的主要目标是使自闭症研究人员(1)更有效地利用当地数据和(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集成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障碍的跨学科研究。这一挑战可以通过在综合数据管理系统中组织研究数据来应对，该系统使来自多项研究的一致干净的数据和多种数据类型可用于快速回答研究问题。通过实施管理标准，对综合数据管理系统的投资还简化了与合作者之间的数据交换。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。一种名为Research Exchange数据库(RexDB)的技术非常接近，但缺少一些重要功能。为了弥补这一差距，该项目将(A)将RexDB增强为可由用户(调查人员及其工作人员)配置，(B)在开放源码许可下发布它，以便任何人都可以自由地使用、修改和分发软件(可以实现，因为项目团队拥有专有组件的版权)，以及(C)重新架构一些组件，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)通过与四个评价地点的利益攸关方接触明确界定软件要求，确定用户需要哪些功能；(2)提供使用户能够(A)配置强大的数据管理系统和(B)使用第三方开发人员增强代码库的软件；(3)通过定期征求四个评价地点的利益攸关方反馈，评价平台支持有效数据管理和交换的能力，并通过灵活、迭代的软件开发过程解决主要差距；(4)允许自由使用、分发和修改平台，使所有组件都可以在适当的开源许可下使用；(5)通过积极促进充满活力的用户-开发者生态，鼓励广泛采用该平台，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.