Our Aims

GenID Outcomes is guided by three core aims that shape our collaborative work and resources.

🌍

Identify and Address Gaps

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.

🛠️

Build Practical Resources

Provide researchers, clinicians, and regulatory agencies with guidance to select valid, reliable, and responsive measures.

👨‍👩‍👧

Reflect Patient and Family Priorities

Ensure outcomes represent meaningful change in daily life for individuals with rare genetic conditions and their caregivers.