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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

Open-Sourcing the Research Exchange Database (RexDB) How to package a successful data management platform extensively used in autism research as an open-source

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Page 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

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

Page 2: Open-Sourcing the Research Exchange Database (RexDB) How to package a successful data management platform extensively used in autism research as an open-source

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

Page 3: Open-Sourcing the Research Exchange Database (RexDB) How to package a successful data management platform extensively used in autism research as an open-source

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

Page 4: Open-Sourcing the Research Exchange Database (RexDB) How to package a successful data management platform extensively used in autism research as an open-source

There is a significant need for

integrated data management

in biomedical and behavioral research

Page 5: Open-Sourcing the Research Exchange Database (RexDB) How to package a successful data management platform extensively used in autism research as an open-source

What’s the Problem?

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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

Page 11: Open-Sourcing the Research Exchange Database (RexDB) How to package a successful data management platform extensively used in autism research as an open-source

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

Page 12: Open-Sourcing the Research Exchange Database (RexDB) How to package a successful data management platform extensively used in autism research as an open-source

The History of RexDB Data Collection

Page 13: Open-Sourcing the Research Exchange Database (RexDB) How to package a successful data management platform extensively used in autism research as an open-source

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

Page 14: Open-Sourcing the Research Exchange Database (RexDB) How to package a successful data management platform extensively used in autism research as an open-source

Where are we now?

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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

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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

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Other Possible Applications of

RexDB

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Want to Learn More?

RexDB.org

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Acknowledgments

•Charles Tirrell

•David Voccola

•Owen McGettrick

•Naralys Sinanis

•Clark Evans

•Frank Farach