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Rick Hansen pushes for a global research registry on spinal injuries

| Source: theglobeandmail.com

Wheelchair athlete again goes beyond borders to urge scientists to share research for a cure

In laboratories around the world, groups of researchers meticulously work to find a cure for spinal-cord injury. But therein lies a problem: They remain isolated from others in their field, and many centres don’t have nearly enough patients to conduct proper studies.

Rick Hansen’s next big project is looking to change all that.

The Canadian icon has already single-handedly put the effects of SCI on the radar. Perched on top of his wheelchair, hands spinning feverishly, he travelled the circumference of the Earth, wheeling his way through 34 countries on four continents to raise awareness of the injury’s traumas.

A quarter-century later, Mr. Hansen is attempting another amazing feat – a global research registry.

The wheeling will be limited, as will the number of worn-out gloves (94 on his last world tour), but starting this week, Mr. Hansen will visit four countries at precisely the same time he did 25 years ago to get medical researchers to break through borders and oceans, sharing their studies, theories and observations on spinal-cord injuries. If specialists opened their research notebooks, the possibility of a cure could be closer at hand: Doctors could address injuries more efficiently and effectively, or even repair the spine through stem cell transplants if there’s enough scientific evidence.

“Globally there is a strong appetite and desire to come together in a truly global network, and that’s what we’re laying the foundation for,” said Mr. Hansen, a former Paralympian. “If we’re going to accelerate progress on the long journey … then we have to magnify our collective efforts.”

Funding for research into spinal-cord injuries has been limited. The Rick Hansen Institute, for example, has received about $30-million from Health Canada and more than $30-million from provinces.

Unlike cancer or heart disease, it’s not as prevalent – as estimated 44,000 Canadians live with traumatic SCI and there are about 1,500 new cases each year – and, as a result, doesn’t necessarily capture the attention of governments. But the plight of those limited to a wheelchair with little hope for a cure is compelling enough for researchers to pour their hearts and minds into it.

Mr. Hansen’s journey began this week in Israel and Jordan, and on Thursday, researchers at the Hebrew University of Jerusalem will officially sign an agreement with the Rick Hansen Institute, a charitable organization, to join the registry. Researchers in Australia, China and the United States will do the same in coming months. There will be some nostalgic moments for Mr. Hansen: He revisits the Allenby Bridge that connects the West Bank with Jordan, pays homage to his late friend Terry Fox at his memorial in Israel and plans to visit the Great Wall of China as he did 25 years ago.

“It’s moving from one person’s journey … to many people’s journey,” said Mr. Hansen, who was left a paraplegic at age 15 after a car accident. “Twenty-five years ago I was pushing my wheelchair through a very large, inaccessible and disconnected world….The world is much smaller.”

The idea for a research registry was first developed after a conference in Vancouver eight years ago. Marcel Dvorak, head of the spinal division at the University of British Columbia’s department of orthopedics, was looking to create a Canadian spinal-cord network. Within days, Mr. Hansen and Dr. Dvorak began to mull over the idea of moving beyond Canada’s borders. There was no shortage of interest. A plan was hatched.

Canada’s research buildings have played no small role in the launch of the registry. While Mr. Hansen is Canada’s ambassador abroad, the UBC’s International Collaboration on Repair Discoveries centre has become a destination for the world’s scientists and doctors. Two neurosurgeons and an orthopedic surgeon in Israel, for example, did either a residency or fellowship with ICORD, the largest spinal-cord injury research facility in the world. Around six surgeons from Australia were trained in Vancouver, and a Canadian is leading a spinal-cord injury research project in Miami that Mr. Hansen will be visiting.

The advances in science for those with spinal-cord injuries thus far have been nothing short of promising. The timing of intervention for patients was once hotly debated. Doctors believed that the injured spinal cord was too delicate to operate on, and patients would have to wait for surgery. But advances in surgical techniques have shown that there could be a benefit to operating early, Dr. Dvorak said.

The next big step? Dr. Dvorak said that a number of studies happening in the pre-clinical stages are looking to directly address the nerves and the spinal cord itself, whether it’s through stem cells or other growth factors that stimulate regeneration of nerves where there’s been damage. He’s hopeful that it will yield a cure.

“We’re at the beginning of this really exciting series of advances that are likely to happen in addressing the nerve tissue,” he said. “To identify exactly what the cure is going to look like we need to look beyond our insular hospitals and operating rooms and look out into the world.”

From Thursday’s Globe and Mail

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