Objectives: We aimed to (1) deploy and host a HIPAA-compliant EDC platform on the Web that is reusable across multiple research studies; (2) configure the platform to store results from standard and experimental research instruments and questionnaires; (3) configure the platform to present EDC forms to both research participants (single-entry) and research staff (dual-entry), with screens optimized for each audience; and (4) automatically push research data into an Integrated Data Management System (iDMS), such as RexDB®.
Methods: To achieve our aims we (1) engaged with autism researchers through structured and unstructured interviews and focus groups to define requirements; (2) packaged the software platform as an open-source project by re-architecting the code, documenting it heavily, and releasing it on BitBucket, a public code repository; (3) evaluated the platform at test sites by collecting user feedback and reviewing support histories; and (4) facilitated the creation of an active user/developer community around the open-source platform by promoting the platform at conferences and online channels.
Results: We have completed steps 1 and 2. Step 2 was accelerated by the ability to build on top an existing code-base: the Prometheus Reusable Online Assessment Delivery System (ROADS), which has been used on a variety of major projects, including the Simons Simplex Collection. However, building an open-source project starting with existing proprietary code posed some unique challenges to architecture and documentation. We have also made significant progress on steps 3 and 4. Preliminary findings show test sites are able to use RexAcquire as intended. Users have configured over a dozen instruments and report that the system is “very user friendly” suggesting good usability. The software is freely available for download, use, and modification as part of the open-source RexDB package at rexdb.org.
Conclusions: The early results of the open-source RexAcquire project are encouraging, and indicate that RexAcquire supports all of the stated objectives, including interactive user configurability, the efficient reuse of research instruments from multiple studies and data types, and the transfer of data into an integrated data management system (RexDB). Anecdotal evidence strongly suggests that RexAcquire can serve to bootstrap an organization’s transition to an integrated data management approach. Immediate next steps include evaluating objective indicators of activity in the open-source community and continued field testing.