A Genomic Approach to
Precision Medicine for Autism
and Neurodevelopmental Conditions
ABOUT
PRISMA STUDY
We are enrolling children and adults with or without autism or other neurodevelopmental conditions who have had diagnostic genetic testing that showed an abnormal (also called pathogenic) result into a research study to understand how genetics can impact their healthcare. The study will take approximately 6 hours, and involves collecting health information and completing questionnaires and assessments online.
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 PROYECT
Informed Consent
After that initial contact, we then schedule a chat over the phone or through Zoom, 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 you're in, we'll ask you to sign electronic consent forms to officially enroll you in the PRISMA study.
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In this initial call and throughout all the forms and questionnaires, you have the option to choose either English or Spanish, whichever language you prefer. We want to ensure that you can fully understand and engage with the PRISMA study in the language that suits you best.
PRISMA RESEARCH PROJECT
Questionnaires and assessments
Following the informed consent call, we'll do a medical history interview to learn more about your child's or your medical, developmental, and family background, helping us understand factors relevant to the study.
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Afterward, you'll receive questionnaires on different aspects of your child's or your thoughts, behaviors, and emotions, gathering crucial information for the study. We'll also ask for your or your child's participation in a computer test to assess cognitive functions, and in a research psychiatric interview, asking about mood and emotions for insights into mental well-being. You'll also be asked to complete medical release forms, authorizing access to relevant medical records like MRIs and EEGs, vital for the study.
PRISMA RESEARCH PROJECT
Follow up
We will follow up with you 1.5-2 years later to inquire about any relevant changes to your child’s or your medical and familial history. This follow-up is crucial for us to ensure that our records remain up-to-date and comprehensive, allowing us to accurately assess any developments or changes in your child’s or your health and family circumstances. Your input during this follow-up period is greatly appreciated and invaluable to our ongoing research efforts.
Your input during this follow-up period is greatly appreciated and invaluable to our ongoing research efforts.
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
