Redefining Quality of Life in ALS: Pathways to Holistic Patient-Centered Outcomes
Time: 3:00 pm
day: Conference Day Two PM
Details:
- Defining what quality of life means for patients and caregivers, including factors such as mobility, independence and emotional wellbeing and how these differ from clinical measures like ALS-FRS
- Examining the inconsistencies and subjectivity in ALS-FRS scoring including environmental and geographical differences, their implications for accurately assessing disease progression and drug efficacy
- Reviewing strategies for developing and validating quality of life as a formal endpoint in clinical trials with input from the regulators
- Analyzing how current tools can be adapted or expanded to capture a comprehensive view of quality of life that aligns with patient priorities
