Project description

In the past, cohort studies have traditionally focused on one aspect (e.g. autism genetics) or on one subset of autistic people (e.g. high functioning autistic adults). The Quebec 1,000 families project (Q1K) will recruit a thousand families across the spectrum of autism in Quebec to build a new generational cohort that will collect a whole set of genetic, cellular, cerebral, clinical and cognitive data. This first large provincial cohort study is supported by a grant of nearly $10 million from the Marcelle and Jean Coutu Foundation and funds from the Transforming Autism Care Consortium (TACC).

This new cohort will generate new discoveries in the field of autism, by creating a participant register, a biological database and a multimodal database (brain, genetic, cellular imagery, behavioral and clinical). The Q1K cohort also aims to facilitate research in autism by adhering to the principles of open science, making the project resources accessible to the autism scientific community. All of these scientific advances will benefit families with autistic individuals as well as clinicians across the province since the integration of clinical services is at the heart of the project.

This cohort is innovative in its goal to recruit an equal number of men and women, adult and children, people with and without intellectual disability, and a measure detailing the degree to which each participant resembles a prototypical autistic phenotype.

Families in the Q1K cohort will be recruited amongst volunteers, people having previously participated in autism research projects or people having been referred by the clinical team of participating institutions. The establishments involved are the Montreal Neurological Institute and Hospital, the Douglas Mental Health University Institute, the Ste-Justine University Hospital Center, the Rivière-des-Prairies Mental Health Hospital, the Sherbrooke University Hospital Center and the Children's Hospital of Eastern Ontario.