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

该项目的总体目标是使自闭症研究人员能够（1）更有效地利用本地数据，（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开源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。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应对，该系统可以从多项研究和多种数据类型中获得一致的干净数据，以快速回答研究问题。对集成数据管理系统的投资还通过实施管理标准简化了与合作者的数据交换。不幸的是，现有的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。一种技术，研究交换数据库（RexDB），非常接近，但缺少一些重要的功能。为了缩小差距，本项目将（a）增强RexDB，使其可由用户配置（调查人员及其工作人员），（B）在开源许可证下发布，以便任何人都可以自由使用、修改和分发该软件（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，使其更加模块化，并且更容易由希望扩展平台功能的第三方开发者修改。 为实现总体目标，该项目将追求五个具体目标：（1）通过与四个评估地点的利益攸关方接触，明确界定软件要求，界定用户需要哪些功能;（2）提供软件，使用户能够（a）配置一个强大的数据管理系统，（B）利用第三方开发人员加强代码库;（3）通过定期征求四个评价地点的利益攸关方的反馈意见，评价该平台支持有效数据管理和交换的能力，并通过敏捷、迭代的软件开发流程解决主要差距;（4）通过在适当的开源许可证下提供所有组件，使平台能够自由使用、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.