CHEO, Shriners Hospitals launch first-of-its-kind fellowship

A first-of-its-kind collaboration between the Children's Hospital of Eastern Ontario (CHEO) and Shriners Hospitals for Children Canada (SHC) will allow children living with rare bone diseases to see a single expert instead of travelling to clinics at multiple hospitals.

The joint pediatric metabolic and genetic bone disorders fellowship will advance pediatric bone health care and research in rare bone diseases, said the CHEO Research Institute in a news release Friday.

“This first-of-its-kind fellowship is the perfect example of transformative collaboration in action. Together, we are building the future of pediatric care in rare bone disorders by training the next generation of clinician-scientists,” said Dr. Jason Berman, CEO and scientific director of CHEO Research Institute, and VP of research at CHEO. 

Patient says seeing all the evolutions taking place ‘fantastic’

Ryan Nicholas lives with osteogenesis imperfecta (OI), which is a genetic bone disorder, known as brittle bone disease. A child born with OI may have soft bones that easily break or get fractured.

Diagnosed in the 1980s, he says it was passed from his father, who was unaware he was a carrier. In an interview with CTV News Ottawa, he says it was first discovered when he was 21 months old after he tripped on the carpet and broke his femur. At the time, he says, OI was not a researched genetic disorder that was well understood.

His daughter Ella Mae Nicholas was also diagnosed with severe-moderate OI Type 4 at birth. The four-year-old has been followed since birth by Dr. Leanne Ward, pediatric endocrinologist and scientific director of The Ottawa Pediatric Bone Health Research Group at CHEO, and will be benefiting from the collaboration, that’s bringing the expertise of Montreal's Dr. Frank Rauch, pediatrician and director of the Clinical Biomedical Laboratory at SHC Canada, to the table.

Nicholas says to hear his daughter was also carrying the disease was difficult, because growing up, treatment was limited to simply fixing broken bones as it happened.

"I'm a pretty strong individual. I have been for a while," he explains in an interview with CTV News Ottawa. "But when I found out that Ella Mae had it — that got me. It was a tough one to take. But I was fortunate enough to have married a very strong woman who has become the pillar for me to lean on."

He says in the 20 years between his own diagnosis and having Ella Mae, he says the leaps in research that has taken place are "mind blowing," and the announcement of the fellowship is "monumental" for families like his.

"The treatment I received to the treatment my daughter is receiving is all due to research," he explains. "Without research she would be travelling down the same road I travelled down, which is not an easy one to go. She has got such a brighter future physically and mentally because of the research that's been done. And to have that research continue is monumental. It's monumental. A lot of families are going to get the benefit of it. Not just mine. It can be countless families, whether they realize it or not."

Here's how the fellowship works:

Fellows will work in each hospital for two years, “developing physicians with expertise in both endocrinology and genetics,” according to the institute.

“Fellows will split their time between CHEO in Ottawa, and the SHC Canada facility in Montreal, gaining experience in both a specialized pediatric orthopedic setting and a more general pediatric hospital environment. This will allow the fellows to see a wider variety of cases and develop a broad skill set that blends both metabolic bone disease expertise, genetics and research, ‘ reads the release.

The first of the two-year fellowship will take place at CHEO, where the team, led by Dr. Ward, who will see children and youth with rare bone disease and take part in “cutting-edge research.”

“Mentoring and training the next generation of leaders in pediatric bone health clinical care and research is critical to ensure our unique field of expertise continues to grow so that the kids of today and tomorrow receive the best care possible. It’s through the sharing of combined knowledge and experience across multiple disciplines that we can better train future clinician-scientists to lead the way in exemplary patient care and scientific discovery,” said Dr. Ward.

In the second year, the fellowship will take place at the SHC Canada facility, which is located in Montreal. It will be led by Dr. Rauch. The Montreal facility will be welcoming children with genetic bone diseases from across North America, while focusing on the research.

“The fellowship will help shape the future of care for bone diseases in children by ensuring that fellows receive the most comprehensive, multidisciplinary training available, and by extension our patients receive the best care anywhere,” said Dr. Rauch.

The first four years of this fellowship program have been funded by Shriners Hospitals for Children Canada via Tunis Shriners of Ottawa.

Medical doctors who have completed their pediatric, pediatric endocrinology, or medical genetics training and wish to specialize in pediatric bone diseases can participate in the fellowship. Their applications are processed through McGill University’s Postgraduate Medical Education Office for the Shriners Hospitals for Children Canada portion, and through Dr. Ward at CHEO for the Ottawa-based component. 

For information about the collaboration, visit McGill PGME and contact [e-mail].

--With files from CTV News Ottawa's Kimberley Johnson