1. 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

2. 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

3. 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

4. There is a significant need for integrated data management in biomedical and behavioral research

5. What’s the Problem?

10. 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

11. 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

12. The History of RexDB Data Collection

13. 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

14. Where are we now?

15. 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

16. 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

17. Other Possible Applications of RexDB

18. Want to Learn More? RexDB.org

19. Acknowledgments Charles Tirrell David Voccola Owen McGettrick Naralys Sinanis Clark Evans Frank Farach