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Understanding the role of rare genetic changes in autism and neurodevelopmental conditions

Autism | Developmental Delay | Genetics | Genetic Testing | Precision Medicine

This project aims to study people with rare genetic conditions like 17q12 and others with commonly occurring genetic causes of autism and psychiatric disorders to understand how genetic data can improve overall care. The study plans to enroll 240 families with at least one person affected by autism or other neurodevelopmental disorders. It involves a consent procedure, research interview, and a follow-up interview after two years. Genetic testing is important but not standardized for autism treatment. The researchers aim to develop a systematic approach to using genetic data for treatment in the future.

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Participation Requirements

  • Sex:

    Female, Intersex, Any, Male

  • Eligible Ages:

    0 to 90

Participation Criteria

Inclusion Criteria:
Participants between the ages of 6 months - 90 years old are eligible to participate if they have had genetic testing done through their medical provider, and results showing a genetic change as the basis for autism or other neurodevelopmental conditions. Participants must be under the care of a medical professional, and must be able to give consent to participate themselves or by a legal guardian. We are currently enrolling participants who speak English or Spanish.
Exclusion Criteria:
Participants will be excluded if they have an acute medical or psychiatric condition that needs urgent management.

Study Location

University of Alberta
University of Alberta
Edmonton, Alberta
Canada

Contact Study Team

Primary Contact

Daniel Moreno De Luca

[email protected]
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Primary Contact

Keely Vachon

[email protected]
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Study Sponsored By
University of Alberta
Participants Required
More Information
Study ID: Pro00129967