Panel Discussion: Putting Patients First in ALS Research Advancing Clinical Insights & Care Through Engagement

  • How patient-reported outcomes, quality-of-life metrics, and digital tools are shaping trial design, endpoint selection, and real-world evidence in ALS studies
  • The role of patient advocacy groups and community engagement in prioritizing unmet needs, accelerating recruitment, and informing study feasibility
  • Lessons from participatory research programs highlighting patient perspectives on symptom tracking, trial burden, and therapy acceptability
  • Strategies for integrating patient insights into regulatory submissions, biomarker development, and therapeutic prioritization, ensuring research translates into meaningful impact for people living with ALS