Their research examines the most complex organ in the human body, yet neuroscientists often work in silos, building a detailed understanding of a single disease affecting the brain and finding few opportunities to compare notes with others.
A new initiative by the Ontario Brain Institute could help change that, by putting a massive set of information about people with brain conditions into a single, searchable database.
Dubbed Brain-CODE, the system will operate much like an Internet search engine, allowing scientists to sort through reams of complex information to seek out patterns and similarities that link one brain condition to another.
“We’re beginning to understand that the pathological basis of many diseases are similar,” said Jeff Coull, a neuroscientist who directs operations at the Ontario Brain Institute. “Because this is so big, there’s so much data and so many individuals involved, it will allow you to pick up these trends that you otherwise wouldn’t see.”
Researchers from dozens of labs across Ontario will begin feeding details about their patients into the database this spring, and the Brain Institute says it hopes to extend access to the system to scientists across the country and around the world as it grows.
The database cost just more than $1-million to start – a price its proponents say was kept low by relying on resources that are already in place. Information will be compiled at the high-performance computing lab at Queen’s University in Kingston.
Debbie Christie, whose son Matthew was diagnosed with moderate autism at age three, has enrolled him in a study that uses an oxytocin nasal spray to determine what effect the drug can have on improving social interactions in autistic children and adolescents.
As the study progresses, a researcher will enter Matthew’s clinical and personal history into the database, including details about his level of education and ethnicity, along with his body mass index, weight and height.
“I’m very excited about it,” Ms. Christie said. She hopes the database will increase the speed of research into autism and improve physician and patient access to information about the disease.
Other patient details that will be collected in the database include genetic and demographic information, primary language and – in some cases – magnetic resonance images of individuals’ brains.
Ultimately, scientists will be able to type key words into a search engine, along with connectors like “and,” “or” and “not” to drill down through the data to look for trends and similarities.
Don Stuss, president of the Ontario Brain Institute, said that information could help unravel the reasons for connections between brain disorders that have long eluded many researchers.
For example, some scientists have pointed out that late-onset depression can be a herald for Alzheimer’s disease. “Now, is it causal, is it correlative, is it reflective? These are the kinds of questions you can ask,” Dr. Stuss said. “And the more you start to classify, the more you can direct treatment.”
Another connection some researchers have explored is whether there are common factors at play in patients with epilepsy and those who suffer chronic pain.
Dr. Coull, who examined the link in his doctoral research, says the database could eventually allow researchers to test the validity of that hypothesis and others, opening the possibility of transferring knowledge about one disease to the study of another.
The project has a green light from Ontario’s privacy commissioner, because all of the data collected will be entered into a “black box” that encrypts anything that could be used to identify patients.
And the outcome of the work could range from earlier detection of illness to better treatments for patients, Dr. Stuss said. “Everybody will benefit if we do this right,” he said. “We’ll have so much data we’ll want to give it away.”