Our mission is to bring together researchers, trialist and families to:

• Identify and evaluate existing outcome measures for use in genetic ID trials, using rigorous scientific methods.

• Develop shared frameworks and glossaries to build a common language across trials, clinics, and advocacy groups.

• Provide resources and tools — including databases, reviews, and interactive filters — that help trialists and clinicians select measures that are most appropriate for their study purpose, population, and research goals.

• Embed patient and family voices throughout our work, to ensure we measure what matters.

What makes us unique is our collaborative model. GenID brings together:

• Researchers and clinicians from multiple disciplines (psychiatry, neurology, psychology, rehabilitation, pediatrics, trial methodology, measurement science).

• Patient advocacy groups (PAGs) and parents, whose lived experience ensures that outcomes and measures are grounded in real-life.

• Regulatory and methodological experts, aligning our work with international standards and trial requirements.

• Global partners, spanning North America, Europe, and beyond, committed to building a truly international network.

There is an urgent need to bring together the rare genetic ID community to systematically assess and prioritize outcomes measures to identify those that are appropriate for use as primary endpoints in clinical trials. Without this work, we risk continued large scale resource waste, and may overlook potentially effective treatments for individuals with lifelong disabilities.