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Identifying Challenges and Opportunities for Genetic Testing in Autism

Autism | Genetics | Implementation | Genetic Testing | Precision Medicine

This project aims to understand the experiences and opinions of people on the autism spectrum, their families, and physicians who care for them regarding genetic testing in order to identify barriers and develop solutions. The study plans to enroll 300 families with at least one person on the autism spectrum and 50 physicians caring for people on the autism spectrum. It involves a consent procedure, an electronic survey, and an interview after one year. Genetic testing is important but not standardized in the clinical care of autism. The researchers aim to inform future interventions to increase rates of genetic counselling and testing to improve clinical care.

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Conditions de participation

  • Sexe:

    Female, Intersex, Any, Male

  • Âges admissibles:

    0 to 90

Critères de participation

Inclusion Criteria:
Autism group: participants between the ages of 6 months - 90 years old are eligible to participate if they have received an autism diagnosis. Participants must be able to give consent to participate themselves or by a legal guardian. We are currently enrolling participants who speak English, Spanish, or French.

Physicians' group: participants between the ages of 18 - 90 years old are eligible to participate if they are a physician who practices in Alberta and cares for individuals on the autism spectrum. Participants must be able to give consent to participate themselves. We are currently enrolling participants who speak English, Spanish, or French.
Exclusion Criteria:
Autism group: Participants will be excluded if they have an acute medical or psychiatric condition that needs urgent management, if their diagnosis cannot be confirmed through medical records, or if they cannot complete the study procedures in a timely manner.

Physician group: Participants will be excluded if they have seen less than three patients with autism in the past year or cannot complete the study procedures in a timely manner.

Lieu de l'étude

University of Alberta
University of Alberta
Edmonton, Alberta
Canada

Contactez l'équipe d'étude

Primary Contact

Daniel Moreno De Luca

[email protected]
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Primary Contact

Dener Cardoso Melo

[email protected]
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Étude parrainée par
University of Alberta
Participants recherchés
Plus d'informations
ID de l'étude: Pro00145198