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Harmonization of Databases: A Step for Advancing the Knowledge About Spinal Cord Injury
Susan Charlifue1, Denise Tate2, Fin Biering-Sorensen3
1Rocky Mountain Regional Spinal Injury System, Craig Hospital, Englewood, CO.
Archives of Physical Medicine and Rehabilitation
|May 4, 2016
Summary
This study reviews spinal cord injury (SCI) research databases, highlighting data limitations. Future collaborations require standardized data collection for better SCI research and patient outcomes.
Area of Science:
- Neuroscience
- Clinical Research
- Data Science
Background:
- Spinal cord injury (SCI) research relies on diverse clinical databases.
- Existing databases have varying formats, data points, and accessibility.
- Lack of standardized data hinders cross-cutting SCI research and collaboration.
Purpose of the Study:
- To overview existing SCI clinical research databases.
- To identify their purposes, characteristics, and user accessibility.
- To propose a vision for future SCI research collaborations.
Main Methods:
- Review and summarize three existing SCI clinical research databases/registries.
- Analyze their formats, data collection methods, strengths, and weaknesses.
- Examine efforts toward uniform data collection approaches.
Main Results:
- Databases vary significantly in size, purpose, data points, and outcome standardization.
- Limitations include lack of population data and common platforms for data exchange.
- Standardizing data collection requires careful planning, resources, and policy frameworks.
Conclusions:
- Establishing common data collection methods for SCI is complex.
- Standardized variables and assessment tools are crucial for international collaboration.
- Improved data comparability and pooling will enhance SCI research generalizability.
