‘A forward-thinking strategy’: IWK establishes new centre to offer more personalized treatment plans

A new centre specializing in precision medicine has been established at the IWK.

Although the IWK Health Centre has a long history of precision medicine practice, the IWK Maritime Centre for Precision Medicine will allow them to provide a wider range of testing and treatments.

Precision medicine uses information about a person’s genes, proteins, environment and lifestyle to prevent, diagnose or treat disease.

“Precision medicine moves away from a ‘one-size-fits-all’ approach and aims to offer personalized treatment plans, which could identify more effective and less toxic therapies,” said Lee Anne Boutilier, IWK health manager of clinical genomics, and IWK lead for precision medicine transformation, in a news release.

“Precision medicine approaches can also help diagnose conditions earlier and help people make treatment decisions that are right for them.”

The release says the new centre will unify the activities of clinical genomics, newborn screening, Maritime Medical Genetics and data analytics. It will also expand that work “exponentially” to help detect and treat life-altering diseases in Maritime children and adults.

“This investment in precision medicine is advancing the future of medicine and patient care in our region,” said Boutilier.

“By establishing the IWK Maritime Centre for Precision Medicine, we’re shifting to a forward-thinking strategy. Our focus on diagnostics, therapeutic interventions, and education initiatives will ensure the most comprehensive care today, while our research collaborations work to unlock new breakthroughs in the future.”

Dr. Ketan Kulkarni, oncologist and hematologist at the IWK, hopes such future breakthroughs will positively impact health outcomes for his young patients.

“The medicine has evolved from identical care for all to individualized care,” said Dr. Kulkarni, noting that nothing could be more relevant to hematology oncology in particular.

“As you can imagine, there is vast complexity in these areas and no two patients are identical. This means that we need advances in care to accommodate for the variations in genetics, patient characteristics, biology of disease, differential response to therapy, different outcomes, and risk factors.”

Eight-year-old Nora Francis and her family know all too well how precision medicine can provide life-changing effects.

At just five weeks old, she developed a nystagmus where her eye started rapidly moving up and down.

After two years of tests, Nora was diagnosed with Leber’s Congenital Amaurosis (LCA), a rare group of hereditary retinal diseases often leading to blindness at a young age.

“We didn’t know we had it,” said Nora’s mother, Sitka Polk, speaking of the disease. “We never knew any relatives who were blind or had any inkling that this was in our genetics until Nora was tested.”

Nora Francis is seen in this image. (Photo submitted)

Following Nora’s diagnosis, the next steps were determining which type of LCA she had.

A gene therapy treatment seeing success in the United States in treating Nora’s specific type of LCA was her best option. Eventually, the treatment was approved and funded in Canada.

“Last year we flew to Edmonton, and she had her right eye done on April 28 and then two weeks later she had her left eye done on May 12,” Polk said.

“Before she was treated, she had night blindness. As in any dark room she couldn’t see anything. At school she always had to have bright lights on. She had a desk lamp. She had a magnifier. She was getting trained with a white cane. She couldn’t read small print.”

Since her treatment, Nora’s vision has greatly improved, something that wouldn’t have been possible without genetic testing at the IWK. She no longer requires a desk lamp and doesn’t need help at school.

Her mother says her focus is now on the art, crafts and stories she loves.

“She loved doing that before she had the treatment, but now we know that this is something she can continue to love.”

Nora Francis is seen in this image holding a piece of art she created. (Photo submitted)

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