Abstract

Data interoperability is crucial for effectively combining data for scientific inquiry. To facilitate interoperability, data standards such as a common definition of variables are often developed. The Open Data Commons for Spinal Cord Injury (odc-sci.org) has established an initial set of community-based data elements (CoDEs)—a minimal set of variables for sharing—to promote data interoperability in SCI research, aligning with FAIR (Findable, Accessible, Interoperable, and Reusable) data principles. We sought to understand the use of CoDEs by the SCI community to inform current standards adherence and future standards development. We systematically analyzed 39 public datasets in relation to 17 required CoDEs and found variations between reported data and the structure specified by the CoDEs. Overall, we found that the enforcement of data standards improved reporting rates of CoDEs variables. Notably, different variables were found to require different levels of curation to ensure semantic equivalence among datasets. We also uncovered specific reporting habits of researchers such as formatting and naming patterns. A need for different data standards based on the nature of the study (e.g., human study, derivative study) was realized alongside a detailed list of issues that should be addressed when implementing such standards. Among the various approaches to developing data standards, ODC-SCI adopted a semi-formal approach by creating standards that are easy to adopt by the user. Our data-driven evaluation of actual reporting behavior shows that this flexibility can lead to subsequent problems in harmonization. This study serves as a baseline analysis of reporting behaviors for shaping and facilitating data standards.

Document Type

Article

Publication Date

3-2025

Notes/Citation Information

0014-4886/© 2024 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).

Digital Object Identifier (DOI)

https://doi.org/10.1016/j.expneurol.2024.115100

Funding Information

A.R.F: NIH/NINDS (R01NS122888; UH3NS10689; U24NS122732 to A.R.F.), Department of Veterans Affairs (I01RX002245, I01RX002787, I01BX005871, I50BX005878 to A.R.F.), Wings for Life foundation (A.R. F.), Craig H. Neilsen Foundation (A.R.F., KF), UC Noyce Initiative (A.R. F.). K⋅F: Wings For Life Foundation, Craig H. Neilsen Foundation, Ca- nadian Institute of Health Research (CIHR), Canada Research Chairs (CRC). A.T.E: Wings For Life Foundation, Canadian Institute of Health Research (CIHR).

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