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New research centre a ‘game changer’ for neuromuscular disease patients

May 10, 2018

Ottawa neurologist Dr. Jodi Warman Chardon recalls seeing patients with neuromuscular diseases — including muscular dystrophy, ALS and others — getting on the train to Montreal to take part in clinical trials not available in Ottawa. Some had to travel much farther.

The image has stayed with her.

“So many people are desperate to participate in clinical trials,” she said. It made her realize more must be done to help make therapies and research available to Ottawa patients closer to home.

The Ottawa Hospital’s new neuromuscular research centre, which opened this week at the Civic campus, will enable patients to take part in clinical trials here in the capital, which will give them access to new treatments that are not otherwise available.

And it will do more than that, said Warman Chardon. The centre will create a hub in Ottawa for physicians and scientists to collaborate on new treatments. She calls it a “game changer.”

Ottawa has one of the highest concentrations of neuromuscular researchers in the world. The new centre will expand the work being done and bring patients and their physicians into the mix.

“We want to be the Stanford of Canada,” said Warman Chardon, who is also associate scientist at The Ottawa Hospital and assistant professor at the University of Ottawa. “We have got a plan to become one of the largest neuromuscular research centres in North America, and the world.”

Among other things, the new centre will allow researchers to get access to blood samples from Ottawa patients to help with their research, said Dr. Robin Parks, a senior scientist at The Ottawa Hospital and professor at the University of Ottawa who helped establish the centre with Warman Chardon.

Patients and their families are also cheering the opening, which, according to hospital CEO Dr. Jack Kitts, gives Ottawa a glimpse of the kind of cutting-edge health care the new Civic campus will bring to the area when it opens. The new campus, to be built on the eastern edge of the Central Experimental Farm is in the planning stages.

Ottawa’s Teresa Buffone, who has family members with myotonic dystrophy, has been one of the forces pushing for the new centre.

As a “super advocate” for people with myotonic dystrophy, Buffone has devoted recent years to raising awareness about, improving treatment for and expanding knowledge of the rare disease that can have a devastating impact on patients and their families.

She set up the country’s first support group for patients with myotonic dystrophy as well as a patient registry and she led a fundraising drive for more research. That work was among efforts that paved the way for the centre.

“People who have these neuromuscular diseases have multi-system difficulties and they just get worse over time. Having a centre where they can go and be followed on a routine basis means the specialists can affect medical interventions at an earlier stage rather than letting the disease progress to a critical stage.”

She, too, said access to clinical trials in Ottawa will make a huge difference to the lives of patients with various neuromuscular diseases. Patients who wanted to participate in a trial involving myotonic dystrophy in the past have had to go to Rochester to do so, which was impossible for many.

She also said it is crucial to future breakthroughs that researchers are able to meet patients personally. She said she had been at conferences in the past in which researchers working on the disease had never met a myotonic dystrophy patient.

“Researchers need to see the effectiveness of these diseases and how they manifest over time.”

She said there are 10,000 people in Eastern Ontario with various neuromuscular disorders.

“I am so happy that it finally came about,” she said of the research centre.