Open-Sourcing the Research Exchange Database (RexDB) How to package a successful data management platform extensively used in autism research as an open-source project Leon Rozenblit, JD, PhD Founder/CEO, Prometheus Research, LLC
Presenter Disclosures Leon Rozenblit (1) The following personal financial relationships with commercial interests relevant to this presentation existed during the past 12 months: Employment by commercial entity, Prometheus Research, LLC Stock ownership, Prometheus Research, LLC
Objectives You will learn about… The need for integrated data management The RexDB Vision The RexDB Project (Past, Present and Future) The significance of Open Source approaches
There is a significant need for integrated data management in biomedical and behavioral research
What’s the Problem?
Primary Functions of an iDMS (RexDB) Acquire electronic data from patients and clinical staff Collect data from a wide range of outside sources Curate data via configurable data quality and consistency checks Explore and query data through focused data sets and powerful search tools
The Benefits of Using RexDB for Integrated Data Management Your Data is… CLEAN with easy to use dual data-entry screens and customized data quality reports ORGANIZED and labeled for easy, repeated use in different research endeavors SAFE with frequent back-ups and comprehensive logging of every change SECURE with compliance with local and federal regulations (e.g., HIC/IRB, HIPAA, HITECH) ACCESSIBLE by statistical packages, analysis tools, and even remote collaborators and PERSISTENT by ensuring research data sticks around after a lab member leaves
The History of RexDB Data Collection
The Project Roadmap Work with stakeholders to define requirements for an integrated data management system to support autism and related disorder research Package existing components into a modular, open-source RexDB system Evaluate the new system at four research sites Create a vibrant open-source community around the platform
Where are we now?
The Value of Open Source Approaches Wider user base - Broader feedback Free to modify - More extensibility Free to distribute - Better sharing through a common standard
What challenges have we faced? Refactoring existing code base and eliminating architectural debt is time- consuming Developing the ability for user-based customization and configurability requires in-depth design Balancing the requirements of our current client-base and general Open Source users is not trivial Designing general solutions for new domains
Other Possible Applications of RexDB
Want to Learn More? RexDB.org
Acknowledgments Charles Tirrell David Voccola Owen McGettrick Naralys Sinanis Clark Evans Frank Farach