An exceptional $10-million donation from the Marcelle and Jean Coutu Foundation is driving a collaborative multidisciplinary undertaking that is set to have an unprecedented impact on autism research. The Quebec 1,000 (Q1K) project is being spearheaded by some of the top scientific leaders in the autism field at five key institutions in Quebec. It will help accelerate the pace of discovery and integrate research outcomes into healthcare practices for autism.
Contributing to the initiative are CHU Sainte-Justine, the Hôpital en santé mentale Rivière-des-Prairies –CIUSSS du Nord-de-l’Île-de-Montréal (CIUSSS-NIM), The Neuro – McGill University and McGill University Health Centre (MUHC), the Douglas Mental Health University Institute and the Montreal West Island Integrated University Health and Social Services Centre – all highly respected for their expertise in autism research and patient care.
Q1K is already resonating with children with autism and their families and sending out a message of hope. Like 17-year-old Benjamin, they look forward to the day when light is shed on a disorder that is still a mystery to so many.
“I really hope that one day we’ll understand why so many other people like me are autistic. It’s not that I want to be like everyone else, but it’d be great to fit in a little better and live life the way I want to.”
The cohort of 1,000 families is the most substantial and diverse group of its kind in the world. It is a unique, centralized source of information that will galvanize genetic, cellular, brain and behavioural research. In so doing, it will put Quebec front and centre of new discoveries and therapeutic approaches that will transform the diagnosis and services provided to people with autism spectrum disorders (ASDs), both in Quebec and internationally.
A unique endeavour
Although there are multiple projects focusing on autism around the world, none of the research to date has established a link between all the determining factors. There is currently a lack of data to develop a comprehensive, in-depth understanding of individual cases of autism so that we can provide more personalized treatment and develop new therapeutic options.
“The Q1K project will be unique in that it will provide a comprehensive analysis of patients. We have been working for quite some time with some of the largest research cohorts out there. We know them very well, but they have limits that we are forced to contend with on a routine basis. Q1K is our chance to develop a study that takes the multiple factors associated with ASD into account.”
Dr. Sébastien Jacquemont
Putting families at the heart of research
To date, research has not measured the quality of life of people with autism and their families using a medical model. Q1K will therefore help make a real difference in their lives.
“Q1K will focus on the experiences and concerns of families, as well as those of autistic children as soon as they can express them. It is our aim to use the knowledge gleaned from this cohort to profoundly transform the way families understand their child’s autism, as well as how autistic children perceive their own condition.” –Dr. Laurent Mottron, psychiatrist and researcher, Hôpital en santé mentale Rivière-des-Prairies – CIUSSS‑NIM
An alternative model
The collaborative Q1K project is bringing together universities and hospitals in Montreal – and elsewhere in the province – in order to unify and complement their respective expertise, and utilize the professional and scientific strengths of each partner.
“Our innovative work model takes collaboration one step further, drawing inspiration from our philanthropic community, especially the Marcelle and Jean Coutu Foundation. What we have been entrusted to do is clear: join forces and work together to provide a better future to people with autism and their families.” – Dr. Guy Rouleau, director and clinical researcher, The Neuro
Philanthropy: a force for change
Once again, it is clear that philanthropy is a force for change that makes a true difference in society. It’s all about t he collaborative efforts of an entire team that are coming together before our eyes to help put these patients on a better path going forward.
“The way I see it, Q1K is a source of hope. The hope that we can better understand my son and better meet and support his needs so he can find his place in the world. I an confident that the project will unleash a sweeping wave of change that will let children, teens and adults with autism find their own place and help us all build a better Quebec.”