Owerko Neurodevelopmental Disorder Recruitment Database
Summary
This project will collect the contact information of families and young adults that are interested in participating in research related to neurodevelopmental disorders (NDD) and provide it to researchers at the University of Calgary that have relevant studies.
Neurodevelopmental disorders (NDD) are a group of conditions that are a common developmental concern in children. These include conditions such as autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), and fetal alcohol spectrum disorder (FASD). However, there is still so much we don’t understand about them. How children present with a NDD and what services or treatments they may need vary from individual to individual. For this reason, there are many studies by different researchers throughout the University of Calgary looking at different aspects of NDD and related developmental concerns. Reaching people to take part in this research can be hard. It can also be hard for people interested in research to learn about relevant research studies. This project will connect people to researchers at the University of Calgary that have important NDD-related studies.
To improve research recruitment and support for families, we will also ask families to give input on their motivations for signing up for research.
Families and individuals can enroll in the database at https://redcap.cru.ucalgary.ca/surveys/?s=MH7RE3YX43 by providing name, contact information, and developmental concerns. This will then be given to researchers that have a specific study so they can contact individuals. You can also learn about research studies through the childdevelopmentresearch.ca website. People can indicate how often they want to be contacted.
Eligibility
Eligible gender: Male, Female, Transgender, Other
Inclusion criteria:
1. Children and youth diagnosed with a neurodevelopmental disorder by a clinician familiar with NDD.
2. Age 1 to 22 years-old at time of diagnosis.
3. Able to supply consent for inclusion in database and contact information so you can be reached again at a later date.
Exclusion criteria:
1. Not able to give consent to be in the database (because of language barrier for example).
2. If consent is withdrawn at any time.
3. Not accessible for re-contact (e.g. moving out of area shortly).
Participate
Fill out the following form if you want to participate in this research
Collection of personal information
Your personal information is collected under
the authority of section 33(c) of the Freedom of Information and Protection of Privacy Act. If
you have any questions about the collection or use of this information, please visit our
Access to Information page.
Additional information
Contact information
Dr. Kara Murias Developmental Pediatrics Alberta Children's Hospital 2888 Shaganappi Tr NW Calgary AB.
Principal investigator:
Kara Murias
Clinical trial:
No
REB-ID:
REB18-1194