259224 Open sourcing RexDB: How to package a successful open-source project as a data management platform extensively used in autism research

Wednesday, October 31, 2012 : 12:30 PM - 12:45 PM

Leon Rozenblit , Prometheus Research, LLC, New Haven, CT
Charles Tirrell , Prometheus Research, LLC, New Haven, CT
David Voccola , Prometheus Research, LLC, New Haven, CT
Owen McGettrick , Prometheus Research, LLC, New Haven, CT
Naralys Sinanis , Prometheus Research, LLC, New Haven, CT
Lauren Bifulco, MPH , Prometheus Research, LLC, New Haven, CT
Clark Evans , Prometheus Research, LLC, New Haven, CT
Background: The need for effective centralized management of biomedical and behavioral research data has expanded dramatically in the past decade. Interdisciplinary, longitudinal, and multi-center research benefits from secure, flexible data management platforms. Current solutions are either insufficiently flexible or too expensive. Our team has developed an integrated data management platform used at over a dozen leading autism research centers over the last 6 years. In late 2011, we began to package this platform, originally developed as a mix of proprietary and open-source components, as an open-source project with the goal of making it freely available to all autism research centers and programs. Methods: We open-sourced RexDB in four phases:(1) Working with stakeholders to define requirements for an integrated data management system to support autism research. (2) Packaging existing components into a modular, open-source RexDB system. (3) Evaluation of the new system at four research sites. (4) Creation of a vibrant open-source community around the platform. Results: Gaps revealed during requirements gathering were addressed during packaging, which also reduced long-term maintenance costs for the platform. Evaluation yielded largely positive results. A unique layered architecture allowed novice and advanced users, data managers, statisticians, and local IT staff to effectively interact with the system, while a granular privileging model supported compliance with local and federal regulations. Users identified additional high-value features to be added in future cycles. Conclusions: Open-sourcing a complex platform poses significant challenges, but can provide a tremendous benefit. A centralized, extensible and secure platform like OS RexDB can help public health researchers make better use of their data. OS RexDB allows researchers to rapidly adjust their data storage methods to meet their dynamic research needs.

Learning Areas:
Communication and informatics
Epidemiology

Learning Objectives:
1. Describe the benefits of using centralized data management functions. 2. Describe some desirable features of an integrated data management platform for interdisciplinary research. 3. Describe the process for packaging a data management platform into an open-source project. 4. List three challenges of implementing the OS RexDB project as a platform for autism research. 5. Identify possible application of an open-source data management platform in other public health research areas.

Keywords: Epidemiology, Health Information Systems

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I lead a team that designs, delivers, and supports sophisticated informatics systems for human biomedical research.
Any relevant financial relationships? Yes

Name of Organization Clinical/Research Area Type of relationship
Prometheus Research, LLC Informatics Employment (includes retainer) and Stock Ownership

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.