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A Protocol for Comprehensive Assessment of Bulbar Dysfunction in Amyotrophic Lateral Sclerosis (ALS)
Published on: February 21, 2011
Development, analysis, refinement, and utility of an interdisciplinary amyotrophic lateral sclerosis database
V Dal Bello-Haas1, D Andrews-Hinders, C B Richer
1Department of Neurology, The Cleveland Clinic Foundation, OH 44195, USA. v.dalbello-haas@csuohio.edu
Summary
Developing an interdisciplinary, healthcare professional-driven database for amyotrophic lateral sclerosis (ALS) improved patient care. This system enhanced data collection, reduced variability in treatment, and provided uniform patient information for better decision-making.
Area of Science:
- Neurology
- Health Informatics
- Clinical Database Management
Background:
- Healthcare professionals (HCPs) managing amyotrophic lateral sclerosis (ALS) require improved methods for patient evaluation and care.
- Variability in clinical practice and data collection hinders optimal ALS patient management.
Purpose of the Study:
- To describe the development, analysis, refinement, and utility of an interdisciplinary, HCP-driven ALS database.
- To systematize data collection and reporting for ALS patient care.
Main Methods:
- Development of a conceptual framework and data collection plan for an ALS database.
- Collaboration with a programmer to establish data entry and management systems.
- Collection of data from 234 ALS patients over two years (September 1996 - August 1998).
- Biostatistical analysis of collected data and subsequent database refinement based on findings and identified challenges.
Main Results:
- Systematized data collection and reporting processes were established.
- Reduced redundancy in data collection among individual HCPs.
- Decreased variability in patient evaluation methods and management decisions.
- Improved availability of uniform patient information for clinical decision support.
Conclusions:
- An interdisciplinary, HCP-driven ALS database enhances the delivery of care by providing systematic, uniform patient data.
- Ongoing refinement is crucial for maintaining the database's effectiveness in decision-making and patient care.
- This approach offers a practical model for improving ALS management in clinical settings.
