While we’ve come a long way in better understanding the spectrum, many questions remain about how to best serve autistic individuals and their families. The goal of Q1K is to accelerate discoveries that can help elaborate services and programs that support autistic individuals in achieving their goals.
An Innovative and Inclusive International Cohort
- Innovative and multidisciplinary research protocol developed collaboratively by 12 researchers with complementary expertise.
- Creation of a next-generation resource that combines the most advanced methods and techniques to better understand genetic, brain, and behavioural domains.
- Support and facilitate research participation for individuals of all ages and for groups typically underrepresented in autism research. The Q1K protocol is designed to be adaptable to different participant profiles.
- Following the principles of open science, Q1K will be an accessible research resource to stimulate the discovery process in Quebec and around the world.
A governance framework defines Q1K’s structure, including its protocol and research agreements, data collection, return of results within clinics, and research access.
Developed using a scientific and ethical evaluation based on the Ministry of Health and Social Services’ framework for multi-centric research projects.
Towards a Learning Health System
- Engaging clinicians as partners who can share opportunities to participate in research.
- Harmonization of clinical and research data collection to reduce the burden of time and energy for families interested in participating.
- Measures selected for research validity as well as clinical relevance. The protocol provides a feedback loop to return research results back to clinics.
The Q1K Registry is a provincial resource that compiles socio-demographic and clinical data of individuals interested in participating in various research projects.
The Q1K Biobank stores biological samples such as DNA and stem cells to accelerate the discovery process in basic research and genetics.
The Q1K Database compiles next-generation genetic sequencing data, clinical, behavioural and cognitive findings, as well as electrophysiology and magnetic resonance imaging data using innovative state-of-the-art methodologies.