Patient-Powered Approaches to Expand Enrolment & The Accessibility of Natural History Data
Time: 1:20 pm
day: Day One
• The need to build better natural history studies
• How do we build natural history studies of each one of these diseases? How much information do you need over how long a period of time?
• Innovative approaches to accelerate how data can be gathered and leveraged to create actionable insights into neurodevelopmental disorders
• Implementing the use of this “patient-powered” design to collect and federate high-quality data
• How important are the natural history studies to delay doing trials due to lack of natural history studies?