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Stories: Tapping every child's promise

Bloorview Research Institute brings together scientists and engineers to study childhood disability

Deane, 5 (right), tries out a vibration sensor worn on a neckband that alerts caregivers to aspiration in children with swallowing problems. Like many technologies developed at Bloorview Research Institute, the device will give children greater freedom at home.

What do a virtual piano and a steroid have in common?

They’re both used by researchers at Bloorview to defy disability and reflect the broad mandate of the hospital’s new research institute – the first dedicated to childhood disability in North America.

Take Kajan, an 11-year-old with a spinal-cord disorder that curls his fingers into his palms. His musical affinity was untapped until biomedical engineer Tom Chau invented a software that allows him to wave his hands across a sequence of coloured balls on a screen – producing a different piano note with each graceful movement.

Meanwhile, Dr. Doug Biggar is flying in from an international conference for parents of children with Duchenne muscular dystrophy. The pediatrician and professor, known in clinic for his delightful bedside manner and bowties, was reporting on his pioneering study of the steriod deflazacort. He’s shown it to cut the risk of heart disease in teens with Duchenne’s by 75 per cent, while dramatically preserving their mobility, breathing and spine function.
Tom and Doug represent the spectrum of a multidisciplinary team of scientists and engineers at Bloorview Research Institute – which was launched in June with a $25 million gift from Bloorview Children’s Hospital Foundation.

“Our aim is to generate knowledge that will enable children with disabilities – not just in terms of function – but also in terms of integration and participation and quality of life,” says Dr. Colin Macarthur, the institute’s director. “Our goal is to be the premier children’s rehab research institute worldwide. Whether it’s a drug or a device, we want to have an international reach.”

Research will be driven by the needs of children and their families “and have immediate application,” Colin says.

It will be multidisciplinary, bringing together scientists in medicine, nursing, rehab therapies, psychology, social work, engineering, dentistry, teaching, epidemiology and biostatistics.
Areas of focus will include the incidence and cost of specific childhood disabilities; evidence-based evaluation of clinical interventions; engineering of high-tech devices that improve the independence of children; and measuring barriers to social participation. “We want to look at the social, cultural, environmental and attitudinal barriers that children with disabilities face, and how we can optimize their participation and integration into the home, school and community,” Colin says.

Bloorview’s researchers have already fostered numerous treatments and technologies that benefit children worldwide. But they never had a stable funding base for scientists’ salaries. The Bloorview Research Institute will remedy this problem, “providing stable and sustained funding to allow for growth,” Colin says.

A first priority is to “bring in summer students, graduate students, post-doctoral fellows and junior faculty who we can train as outstanding scientists and inspire to go out and work in the field of pediatric rehabilitation internationally,” Colin says.

Bloorview is the only teaching hospital for children’s rehabilitation in Canada – affiliated with the University of Toronto – and already provides hands-on clinical and research training to about 300 students from diverse health professions each year.

To be connected with expert sources, contact:

Louise Kinross, Manager, Communications
Tel: 416-424-3866
Pager: 416-589-8826
E-mail: media at bloorview dot ca

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