AIMS
Reflect Patient and Family Priorities
Ensure outcomes represent meaningful change in daily life for individuals with rare genetic conditions and their caregivers.
Build Practical Resources
Identify and address gaps in clinical trial outcome measurement in genetic intellectual disability (ID) through a sustainable international network of scientists, methodologists, clinicians, trialists, and family partners.Identify and Address Gaps
Provide researchers, clinicians, and regulatory agencies with guidance to select valid, reliable, and responsive measures.