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

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.