Neuropsychological assessment practices in PRECISION-ALS: challenges and opportunities for harmonization

Area of Science:

• Neuropsychology
• Neurology
• Clinical Trials

Background:

• Neuropsychological assessment is crucial for understanding cognitive and behavioral changes in Amyotrophic Lateral Sclerosis (ALS).
• The PRECISION-ALS consortium aims to standardize research practices across European sites.
• Current variations in assessment methods may hinder cross-country data comparability.

Purpose of the Study:

• To comprehensively survey current neuropsychological assessment practices within the PRECISION-ALS consortium.
• To identify areas for harmonization in cognitive and behavioral assessments.
• To facilitate more robust cross-country comparisons of ALS patient data.

Main Methods:

• Semi-structured interviews with representatives from PRECISION-ALS sites.
• Gathering information on screening, impairment classification, and longitudinal follow-up of ALS patients.
• Descriptive analysis of assessment practices across participating sites.

Main Results:

• Ten of eleven sites use cognitive/behavioral screening (e.g., Edinburgh Cognitive and Behavioral ALS Screen).
• Impairment classification definitions and consideration of age/education vary significantly.
• Longitudinal protocols and application of behavioral screening data (ECAS caregiver interview) show inconsistencies.

Conclusions:

• Divergent neuropsychological screening practices exist within PRECISION-ALS.
• Site-specific variations can confound cross-country research data.
• PRECISION-ALS will establish harmonized protocols for consistent neuropsychological assessment.