Identifying challenges and opportunities for implementation of standard of care testing for autism and neurodevelopmental conditions
ABOUT
Attitudes, Perceptions & Results About Genetic Testing For Autism
We are enrolling both children and adults diagnosed with autism, as well as physicians who provide care to individuals on the autism spectrum who reside in Alberta. The study aims to understand the experiences and perspectives of individuals on the autism spectrum, their families, and physicians regarding genetic testing for autism. Participation will take approximately two hours and involves completing an online survey and an interview.
PRISMA RESEARCH PROJECT
Initial Contact
We do our best to share information about our study with potential participants, so that those who are interested can reach out to us, which is the first step in connecting with research.
After that initial contact, we schedule a call to go over the nature and purpose of the study, explain what participation entails, and answer any questions. If you are interested in moving forward, we then move towards the informed consent process.
PRISMA RESEARCH PROJECT
Informed Consent
After that initial contact, we then schedule a chat (online or in person), where we'll walk you through the study's purpose, tell you more about the different steps of the study, and any other details you might want to know. This is your chance to ask us anything about the study to help you make an informed decision.if you decide to participate, we will ask you to sign electronic consent forms to officially enroll you in the study.
If you are an autistic adult or a parent or guardian providing consent on behalf of your child or family member, you will also be asked to complete a medical release form, authorizing access to relevant medical records that confirm the autism diagnosis.
Throughout all the steps of the study, you can choose to participate in English, French, or Spanish, depending on your preference. We want to ensure that you can fully understand and engage with the study in the language that suits you best.
PRISMA RESEARCH PROJECT
Online survey
Once you consent to be in the study, we will ask you to answer an online survey. The survey includes questions about your experiences and perspectives on genetic testing for autism and will take approximately 20-30 minutes to complete.
PRISMA RESEARCH PROJECT
Interview
We may contact you again after you completed the survey to participate in a one-on-one interview. We will ask you more in-depth questions about your experiences and perspectives on genetic testing for autism.The interview will take no more than 60 minutes.
Are you interested in participating?
To participate, contact Dr. Daniel Moreno De Luca or the PRISMA research staff at +1 780 492 4467 or prisma@ualberta.ca
