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Researchers to recruit 1,000 Quebec families for new major autism study
In an unusual arrangement, several leading medical research centres in Quebec are coming together to collaborate on an ambitious study on autism spectrum disorder.
The announcement was made Tuesday morning at one of the participating institutions, Sainte-Justine Hospital.
Dubbed the ‘Quebec 1,000’, the project will recruit and follow 1,000 families to obtain a diverse array of information and data for genetic, cellular, brain and behavioural research.
Information about family-recruitment will be available on the Transform Autism Care Consortium website when the study, according to Ste-Justine spokesperson Florence Meaney. People who are interested, are advised to sign-up online as associate members. They will then be added to a mailing-list and contacted when there's news.
“What's really exciting about it is it's a long-term, very large, rich resource,” according to Dr. Sebastien Jacquemont. The Sainte-Justine geneticist says it forces all the investigators to work together “and that's a very powerful incentive.”
The research is being funded by a $10-million donation from the Marcelle and Jean Coutu Foundation and also involves scientists at the Douglas Mental-Health Institute, the Fondation les Petits Tresors and the Montreal Neurological Institute.
Other centres will eventually open in Sherbrooke, Gatineau and Quebec City.
Each institute brings its expertise to the table. For example, the Neuro plans to use a powerful full-body MRI machine – the only one in Canada to scan 400 people.
The director of the Montreal Neurological Institute says he and the other partners formed the Transform Autism Care Consortium (TACC) and began planning the project three years ago, but didn't obtain the government funding needed to collect the data from families.
“Philanthropy allows us to do something we can’t do otherwise,” said Dr. Rouleau. He says he hopes when “most of the experts on autism in Quebec speak with one voice,” it will help encourage the government to direct its research dollars towards this bold initiative and other autism research
“Brain development disorders are a huge public health problem because the child is affected and it's a lifelong disability,” adds Dr. Jacquemont. The geneticist says one out of every 68 people has some form of autism and “all of the other medical disciplines are way ahead in terms of treatment and knowledge compared to the disorders of the developing brain.”
The Montreal father of 17-year-old Manoli, who has autism, says it's one reason why this private donation means so much to him. Nick Katalifos says the “message has to go out that this really is a priority, because of the numbers, and the needs of these families.”
“Manoli is a wonderful kid, we're really proud of him. He's come a really, long way…he’s a gentle kid who loves classical music.” However, Katalifos worries about his son’s future because he has some trouble communicating.
Research into autism has progressed over the past decade, but it remains a complex disorder. The director of the Montreal Neurological institute says scientists have identified quite a few genetic factors that are important in the most severe forms of autism.
Dr. Guy Rouleau says, however, the less severe forms of autism are still mysterious, and “we need to have everyone working together pushing in the same direction to make significant advances.”
About 15 years ago, geneticists were searching for one autism gene. “When we look back at that period, it's just crazy,” says Jacquemont. “Now we think there's one thousand or two thousand” genes involved, along with other factors.
Families recruited for the study will have their entire genome sequenced, so researchers can look for genetic variants that might lead to autism-related cognitive and behavioural alterations.
The scientists hope to be able to break down what is now a very broad autism category, into smaller, biologically relevant sub-categories. It would then be easier they say, to establish and run a clinical trial on patients who perhaps share the same biological mechanism.
Making discoveries is the mission of the Transform Autism Care Consortium, which counts all four institutions as partners. The project will use an ‘open-science’ model that will allow scientists around the world, to access the data.
“We think that there will be a transformation in how we take care of patients with autism, and yes," Dr. Rouleau says, “there are going to be therapies that develop,” though “it’s not going to happen quickly.” Still, Rouleau says he thinks some forms of autism “will be treatable – not curable – but treatable.”
“It's really important these approaches be based on hard science,” says Nick Katalifos, the Montreal parent of Manoli, a 17-year-old boy with autism. Katalifos says “too often in desperation a lot of families try things can even be dangerous quite frankly so for me to see an effort like this is critical.”