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Clinical trials closer to home for patients with neuromuscular diseases

 
Clinical trials closer to home for patients with neuromuscular diseases

Dr. Jodi Warman Chardon (right) and Dr. Robin Parks are pleased that patients will have access to clinical trials in Ottawa once The Ottawa Hospital’s Neuromuscular Clinical Research Centre opens next year.

Neurologist Dr. Jodi Warman Chardon used to take the train regularly to Montreal, and she often saw patients with neuromuscular diseases travelling to take part in clinical trials there that weren’t available in Ottawa. Other patients travel to Toronto, London and even Miami.

“It just humbled me,” said Dr. Warman Chardon. “So many people are desperate to participate in clinical trials in Ottawa. I realized we needed to offer more therapies and research for our patients.”

Many others – including patients, scientists and neurologists – were wrestling with the same challenge. Now, there’s a solution.

The Ottawa Hospital’s Neuromuscular Clinical Research Centre (NCRC) will open next year at the Civic Campus, bringing hope for better treatments and cures to thousands of Ottawa-area patients who have neuromuscular diseases such as ALS (amyotrophic lateral sclerosis, aka Lou Gehrig’s disease), myotonic dystrophy, muscular dystrophy and Guillain-Barré Syndrome.

“Ottawa is poised to be a national leader in clinical care, and the NCRC will increase basic science, translational and clinical research to improve the lives of patients with neuromuscular diseases,” said Dr. Robin Parks, a senior research scientist at the hospital.

Many patients aren’t able to travel, so having clinical trials and improved treatment options in Ottawa is a breakthrough for them.

Karen Lawrence, Clinical Manager on 6 West at the General Campus, is one of those patients. Genetic testing revealed she has a familial gene for ALS – which has taken 14 family members. Her father and uncle took part in clinical trials in Montreal, and she is part of a research study in Miami. Once the NCRC opens, she can have the required tests done here instead.

“The ALS clinic at the hospital’s Rehabilitation Centre provides good rehabilitation and supportive care,” said Lawrence. “However, with the NCRC, patients can participate in much-needed research and clinical trials.”

karenlawrence

Once the new Clinical Research Centre opens, Karen Lawrence won’t have to travel to Miami to participate in research trials.

The NCRC will bring together many existing hospital neuromuscular disease experts, including neurologists, researchers, technologists and nurses, and will offer new therapies, clinical trials and world-class training for the next generation of physicians and basic scientists.

“Offering an accurate diagnosis remains the crucial first step, but this is the starting point in the journey of care,” said Dr. Pierre Bourque, Director of the new NCRC. “This is an incredibly exciting time, as many neuromuscular diseases are now treatable, for example with immune-based interventions. Research is opening new avenues.”

“This is exactly the care we’d want for our loved ones,” said Dr. Warman Chardon. “Clinicians working together with scientists – we’ll be unstoppable. The new centre will be a game changer. And that’s what we need for our patients.”

 

 
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