Québec 1,000 Families (Q1K) is an initiative of the Transforming Autism Care Consortium (TACC), built on the principles of collaboration, inclusion, and innovation. Q1K combines neurodevelopmental research with the lived and living experiences of individuals with neurodevelopmental conditions and their families to accelerate discoveries and transform care and services.
A Collaborative Approach
Research thrives when it is shaped by diverse perspectives. The Q1K initiative brings together families, researchers, clinicians, and community members to create a shared understanding of autism and related neurodevelopmental conditions.
Marie-Josée Coutu, President of the Fondation Marcelle and Jean Coutu, describes Q1K as a unique opportunity: “Québec 1,000 Families allows for the creation of a network where everyone can contribute, exchange, draw on, and provide the best of their knowledge. This initiative brings hope for future scientific and societal advancements.”
Innovative Research for Global Impact
Q1K is the largest clinically integrated autism research project in Quebec and one of the largest in the world. With its Open Science database, researchers worldwide have the possibility of accessing information on genetics, brain function, and behaviour. Guy Rouleau, Principal Investigator, emphasizes, “Q1K contributes to enhancing the leadership of Québec’s research teams and positioning Québec as an innovative player in international science.”
Participants play a significant role. Sylvie Lauzon, mother of Marc-Antoine, shares: “Participating in research is essential for me as a parent. Research discoveries allow my son and me to better understand who he is, and me to better support him in his journey towards an adult life in which I hope he’ll be happy.”
A Comprehensive Resource for Discovery
Q1K’s three main resources are:
- A Registry to connect families and individuals interested in research.
- A Biobank for biological samples, including DNA, supporting genetic studies.
- A Database consolidating data on health, genetics, and behaviour to deepen understanding of neurodevelopmental conditions.
The initiative’s governance ensures data collection and dissemination are streamlined and ethical, benefitting both research and clinical care. Findings are shared with clinicians to improve real-world practices, creating a continuous learning health system.
Join the Movement
Q1K invites individuals of all ages and their families to participate, offering a protocol that adapts to diverse needs. As Benjamin Talbot, a young autistic adult, shares, “I hope with all my heart that we’ll be able to understand why I and so many others are autistic…to live the life I want.”
Visit the Q1K website to learn more.