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.

Public Health Relevance

This project will empower autism investigators to make more effective use of interdisciplinary research data they collect, and to more efficiently exchange data with the scientific community. We will achieve this goal by creating free (open-source) software that can easily integrate various kinds of data from different studies;no such software currently exists. This software will allow researchers to optimize their use of scarce research dollars, and will help accelerate progress in understanding autism and other mental disorders.

National Institute of Health (NIH)
National Institute of Mental Health (NIMH)
Small Business Innovation Research Grants (SBIR) - Phase I (R43)
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Special Emphasis Panel (ZRG1-BBBP-V (10))
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Grabb, Margaret C
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Prometheus Research, LLC
New Haven
United States
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Johnson, Stephen B; Farach, Frank J; Pelphrey, Kevin et al. (2016) Data management in clinical research: Synthesizing stakeholder perspectives. J Biomed Inform 60:286-93