Panel Discussion: Patient, Caregiver & Practitioner Perspectives: Lived Experience, ALS Multi-Disciplinary Clinic Access & Choosing to Participate in a Clinical Trial
Time: 4:00 pm
day: Conference Day Two PM
Details:
- Understanding the broader patient experience from both patient and caregiverperspective
- Exploring the path to receiving an ALS Diagnosis and finding a multidisciplinary clinic and how we decrease time to diagnosis
- Unpacking the decision to participate in a clinical trial
- Balancing patient centricity and science in developing clinical trial protocols
- Discussing how to gather actionable insights from patients and PAGs to ensure input drives meaningful change in trial processes
- Examining strategies to make trials more accessible to patients including geographical, financial and logistical barriers, while fostering open communication between researchers and participants
- Highlighting how caregiver roles and patient input can shape policies to improve trial participation rates and strengthen trust within the ALS community
