A New STAR Rises: How a Canadian Partnership is Tackling Rare Bone Disease

MONTREAL and LONDON, Ontario – November 28, 2025

For families across Canada navigating the complexities of a rare childhood bone disorder, the journey is often marked by uncertainty, frequent hospital visits, and a search for answers that can feel isolating. But a new, collaborative beacon of hope has just been lit. Shriners Hospitals for Children Canada and Children’s Hospital at London Health Sciences Centre (LHSC) have announced the launch of a landmark pan-Canadian research initiative, the Skeletal Tracking to Accelerate Research (STAR) Program, aimed squarely at unlocking the secrets of these debilitating conditions.

Backed by a $400,000 joint research grant, the STAR Program represents a powerful fusion of expertise and resources. It’s an ambitious effort to not only understand the fundamental mechanisms behind conditions like genetic rickets and osteogenesis imperfecta (brittle bone disease), but also to translate those discoveries into better, more accessible care for children. For patients like Gabriella, who lives with X-Linked hypophosphatemia (XLH), the most common form of inherited rickets, this initiative moves the needle from abstract science to tangible hope for a healthier future.

Beyond Hospital Walls: A Blueprint for Collaborative Care

The STAR Program is not a sudden development but the calculated result of a strategic vision set in motion one year ago. In August 2024, the two pediatric powerhouses announced a groundbreaking five-year affiliation, supported by a $1.5 million investment from Shriners Children’s and Children’s Health Foundation. The goal was to dismantle geographical barriers and create a seamless network for care, research, and education.

Historically, families in Southwestern Ontario facing a complex diagnosis like osteogenesis imperfecta often had no choice but to undertake the long journey to the ultra-specialized Shriners facility in Montreal. The 2024 agreement directly addressed this burden by establishing a new Shriners Rare Bone Disease Clinic at Children’s Hospital in London, bringing world-class expertise closer to home. This new research program is the next logical—and most impactful—step in that partnership.

“This collaboration has shown us the power of what’s possible when two institutions with shared values and complementary expertise come together,” said Dr. René St-Arnaud, Director of Research at Shriners Hospitals for Children Canada. “We are proud to move forward with this first joint research program, which will serve children with some of the most complex and underserved bone conditions.”

This model of inter-institutional collaboration, which pools financial resources, clinical data, and intellectual capital, is being watched as a potential blueprint for how Canada can more effectively tackle rare diseases on a national scale.

Inside the STAR Program: From Data to Discovery

Co-led by Dr. Leanne Ward of Children’s Hospital and Dr. Frank Rauch of Shriners Canada—two of the country’s leading experts in pediatric bone health—the STAR Program is built on three interconnected pillars designed to accelerate progress from the laboratory to the bedside.

First is the STAR Clinical Registry, a comprehensive database that will track the evolution of rare bone conditions in children across the country. This registry will provide researchers with an invaluable, real-world look at how these diseases manifest and progress, moving beyond isolated case studies to identify larger patterns.

Second are the STAR Demonstration Projects, which unite lab-based science with patient-focused research. The program’s first project is a perfect example. Scientists will use advanced molecular genetics to investigate why some female carriers of the gene for XLH develop the disease. They will test the theory that in some bone cells, the healthy copy of the gene is randomly “switched off,” leaving only the faulty one active. “By combining our clinical insights with powerful research tools, we’re building a foundation for discoveries that can lead to earlier diagnosis and more personalized treatments,” explained Dr. Frank Rauch, whose work at Shriners Canada has made him a global authority on osteogenesis imperfecta.

Finally, the STAR Learning and Discovery Network will ensure that knowledge flows freely between the Montreal and London teams. This pillar facilitates ongoing collaboration, training for the next generation of specialists, and the rapid exchange of new findings, creating a self-reinforcing cycle of innovation.

“We’ve designed this program to bring researchers and clinicians together in a way that directly responds to what families are telling us they need,” noted Dr. Leanne Ward, a Paediatric Endocrinologist at Children’s Hospital. “The STAR Program gives us the ability to study real-world patient challenges and move faster toward solutions that will make a difference in their care.”

A Strategic Push for a Healthier Future

This initiative arrives at a critical time. Rare bone disorders, while individually uncommon, collectively represent a significant burden on Canada’s healthcare system. Osteogenesis imperfecta, for example, affects roughly 1 in 15,000 Canadians. Studies in Ontario show its prevalence is highest in young children, who can experience over one fracture per year. Compounding the challenge is a lack of approved treatments, leaving clinicians to manage symptoms with limited tools. The STAR Program is a direct response to this unmet need.

For Shriners Hospitals for Children Canada, this partnership is a key component of a broader national strategy. For nearly a century, the Montreal-based hospital has been a leader in pediatric orthopedics, but its vision now extends to creating a web of expertise across the country. This collaboration solidifies its presence in Southwestern Ontario and serves as a proof of concept for future partnerships, bringing its mission of innovative care closer to all Canadian children.

For Children’s Hospital at LHSC, the initiative reinforces its position as the third-largest hospital-based child health research institute in Canada. The program aligns perfectly with its mission to prevent and treat diseases affecting youth through cutting-edge science.

“Children’s Hospital and Shriners Hospitals for Children Canada are both deeply committed to advancing paediatric health and this collaboration is a natural extension of that shared mission,” said Dr. Craig Campbell, Department Head of Paediatrics at LHSC. “Together, we can accelerate research that delivers better treatments, better outcomes, and brighter futures for young patients.”

As the STAR Program embarks on its initial two-year phase, the ambition is clear. The teams plan to expand the registry to include more conditions and, eventually, open the platform to collaborators across Canada, transforming a powerful partnership into a truly national force for pediatric health innovation.