Saturday, October 20, 2012

Patients, families help direct groundbreaking brain research

WILLIAM SUAREZ/HOLLAND BLOORVIEW Holland Bloorview patient Corvin shows Dr. Tom Chau his favourite computer game in 2009. Dr. Chau and his team had developed a customized communication switch to allow Corvin to access a computer.

Two years ago, a 26-year-old man with severe spastic quadriplegic cerebral palsy communicated with the outside world for the first time.

Tom Chau, vice-president of research at Holland Bloorview, and his team had spent months training him how to use the heat from his mouth, one of the only parts of his body that he could control, by opening and closing it.

These signals, when linked to an infrared thermographic switch, allowed the man to type his first word.

“M-U-T-H—,” he wrote.

“Mouth,” a research assistant in the room said, according to Chau. “Are you typing, ‘Mouth?' ”
“ — E-R,” he finished.

“He typed ‘Mother,' ” Chau recalls. “He typed ‘Mother.' ”

Chau says it is stories like these that motivate him in his work. There are 18 scientists at Holland Bloorview’s Research Institute, with four focusing on three to four different groundbreaking, brain-related research initiatives at any given time. It sounds like a lot, but Chau says resources are limited and they have to be choosy about what projects to take on.

Since children and their families at the hospital act as research subjects, Chau says it's often their input that informs the direction research takes.

In addition to Chau's work in brain computer interfacing, scientist Darcy Fehlings studies neuro-reorganization, which focuses on the rehabilitation of children with congenital brain disorders; Michelle Keightley is investigating the neuro-rehabilitation of kids with acquired brain injuries; and clinician-scientist Evdokia Anagnostou is a child neurologist and the co-lead of the Autism Research Centre at Holland Bloorview, which opened in 2011.

“Here, we believe that understanding the biology will lead to treatment,” Anagnostou says. “If we don't understand what the biological problem is, then our attempts for therapeutics are very modest.”

The centre is tapped into global autism spectrum disorder (ASD) research, and scientists communicate with the scientific community and the Holland-Bloorview community to decide what initiatives to take on.

Recently, Anagnostou studied oxytocin hormone levels. In women, the hormone is important for producing breast milk and during labour and delivery. But when the oxytocin gene in male and female animals was removed, the animals lost aspects of their social function.

Anagnostou is applying these findings to kids with ASD in the hope that by manipulating their oxytocin levels she can improve their social interactions.

In another Holland Bloorview study, the ratio of chemicals in the brain associated with excitability and calmness are manipulated with Riluzole, a drug used to treat amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig's disease. Scientists believe that there may be an imbalance in this chemical ratio in the brains of kids with ASD, making it difficult for them to filter out what most people consider “noise” or insignificant information.

There are already therapeutics that patients benefit from at Holland Bloorview, and the new 18-month well-baby visit, a program being rolled out by the Ontario government, could help pediatricians recognize the signs of autism or other issues at an early age. But in order for kids to benefit from the early diagnosis, they must receive treatment.

“The earlier we pick them up, the better the chances for outcomes,” Anagnostou says. “But do you know what the Toronto system for autism services is doing with early diagnoses? They put them on a waiting list until they're three.”

Keightley, a neurologist, studies acquired brain injuries, such as meningitis, vasculitis, stroke and concussions, which have become particularly topical with respect to professional sports.

Scientists have developed new “return-to-play” guidelines for adults who have suffered a concussion, stipulating a period of rest before they can play again. But there are no such evidence-based guidelines for children and youth.

“In the province of Ontario alone, there are probably 240,000 kids playing registered hockey. And we know that a conservative estimate of a concussion is 10 per cent,” says Keightley. “So that's 24,000 concussions happening every year in the sport of hockey alone.”

In one study, Keightley had kids wear a special helmet while they played hockey that recorded information about what parts of the head were hit. Scans of their brains were taken before and after games, in an effort to see if hits affected brain function. Results are pending.

Despite the exciting prospects in brain research at Holland Bloorview, Chau says one of the more challenging aspects is that there's always a chance participants won't benefit directly from their participation, nor is there any certainty that the experiment will work. And since children and families can commit themselves to studies for long periods of time, it can really test the resilience of researchers and their subjects. And, yet, according to Anagnostou, they never have any shortage of willing participants for the work they're doing.

“I have to say it has been impressive how willing Ontarians are to participate,” she says. “We haven't had to place a single ad in the newspaper yet for our study. They come.”

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