Open-Sourcing the Research Exchange Database (RexDB) How to package a successful data management...

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, PhDFounder/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

ObjectivesYou 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

ManagementYour 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