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About SickKids

June 12, 2013

Seven Toronto research organizations join new non-profit global alliance for the responsible sharing of genomic and clinical data

Dr. Catharine Whiteside, Dean of the University of Toronto Faculty of Medicine and Vice Provost, Relations with Health Care Institutions, announced this week that seven of Toronto’s leading research organizations have joined together in an unprecedented global alliance of more than 70 organizations engaging over 40 countries around the world. The alliance aims to set new, unified standards for managing and sharing of genomic and clinical data to enable rapid progress in biomedical research and to advance human health.

The past decade has brought about an explosion of genomic data in medical research. But currently much of this data is collected and analyzed in isolation – by disease, by country, or by institution - limiting its impact. The alliance aims to bring together ethics, privacy, medicine, research and technology to set new, unified standards that will allow data across the world to be shared in a responsible, ethical manner. A standardized system will allow for the aggregation of data and help researchers worldwide collaborate to tackle more complex problems with more efficiency.

“To realize personal, genomic-based treatments for disease, we must pool expertise and break down institutional barriers,” says Dr. Whiteside. “By integrating U of T’s thriving community of researchers, teachers and clinicians, this alliance will have a powerful impact on health locally and globally.”

The seven University of Toronto-affiliated organizations participating in the alliance are the Samuel Lunenfeld Research Institute at Mount Sinai Hospital, Sunnybrook Health Sciences Centre, The Hospital for Sick Children (SickKids), University Health Network, University of Toronto and the Ontario Institute for Cancer Research, which also serves as the Secretariat for the International Cancer Genome Consortium.

“International cooperation is essential to make personal medicine a reality,” says Dr. Stephen Scherer, Director of the University of Toronto’s McLaughlin Centre and The Centre for Applied Genomics at SickKids. “The alliance will create a robust framework, enabling scientists to collaborate and bring treatments to patients sooner.”

“Mount Sinai Hospital’s Samuel Lunenfeld Research Institute is proud to be a founding member of this global alliance. An alliance of this scope will be instrumental in resolving some of the major hurdles to bringing new genomics knowledge and technology into medical practice and will ensure timely translation of genomics discoveries into improved population health,” says Dr. Katherine Siminovitch, Director, Personalized Genomics and Innovative Medicine at Mount Sinai Hospital who has developed a genetic test for a rare and usually fatal immune deficiency disorder called Wiskott-Aldrich Syndrome. Dr. Siminovitch has also identified gene variants associated with risk for rheumatoid arthritis and other debilitating autoimmune diseases.

“Our collective understanding of human biology has never been better positioned to facilitate its application toward understanding the genetic basis of health and disease,” said Dr. Michael Julius, Vice-President, Research of Sunnybrook Health Sciences Centre. “The delivery of precision, individualized medicine is within our grasp, and the inception of the Global Alliance will be a critical enabler of achieving the goal responsibly.”

“University Health Network is pleased to join the Global Alliance,” said Dr. Benjamin Neel, Director of the Ontario Cancer Institute – the research arm of the Princess Margaret Cancer Centre.  “As an organization which is now offering personalized cancer medicine through the IMPACT and COMPACT studies, we see cooperation around the world on genetic studies as an important direction for all research facilities. In our early work with IMPACT – and with our capabilities with clinical sequencing of genes – we have seen the resulting information on individual patients change approximately 30 per cent of the treatment courses for those enrolled in this clinical trial. This study provides the only ongoing clinical sequencing in Canada with results delivered to patient medical records.”

“At present, it is generally not possible to predict which changes in DNA sequence lead to clinical consequences. Only by comparing each personal genome sequence to a large repository of other such data can robust patterns and relationships be identified,” said Dr. Tom Hudson, Chairman of the Executive Committee of the International Cancer Genome Consortium, and President and Scientific Director of the Ontario Institute for Cancer Research. “The stakes are high, because if we get it right we can create new opportunities to define diagnostic categories, streamline clinical trials, and match patients to therapy. We want to make sure this is done in a global manner, and with the highest standards for ethics and privacy.”

Mount Sinai Hospital 

Established in 1985, the Samuel Lunenfeld Research Institute of Mount Sinai Hospital is one of the world's leading centres for biomedical research. The Institute is part of Mount Sinai Hospital, an internationally recognized academic health science centre affiliated with the University of Toronto. Research at the Lunenfeld is focused on women’s and infants’ health, cancer biology, stem cell biology, neurobiology, diabetes, arthritis, genetic disorder research and systems biology. The Lunenfeld’s internationally recognized and award winning researchers continue to make leading-edge discoveries in the prevention, detection and treatment of cancer, diabetes, arthritis, osteoporosis, psychiatric disorders, kidney disease, women’s and infants’ health, inflammatory bowel disease, and spinal cord injury. For more information about the Lunenfeld, please visit www.lunenfeld.ca.  

Sunnybrook Health Sciences Centre

Sunnybrook Health Sciences Centre is inventing the future of health care for the 1.2 million patients the hospital cares for each year through the dedication of its more than 10,000 staff and volunteers. An internationally recognized leader in research and education and a full affiliation with the University of Toronto distinguishes Sunnybrook as one of Canada’s premier academic health sciences centres. Sunnybrook specializes in caring for high-risk pregnancies, critically-ill newborns and adults, offering specialized rehabilitation and treating and preventing cancer, cardiovascular disease, neurological and psychiatric disorders, orthopaedic and arthritic conditions and traumatic injuries. The Hospital also has a unique and national leading program for the care of Canada’s war veterans. For more information about how Sunnybrook is inventing the future of health care please visit us online at www.sunnybrook.ca.

The Hospital for Sick Children

The Hospital for Sick Children is recognized as one of the world’s foremost paediatric health-care institutions and is Canada’s leading centre dedicated to advancing children’s health through the integration of patient care, research and education. Founded in 1875 and affiliated with the University of Toronto, SickKids is one of Canada’s most research-intensive hospitals and has generated discoveries that have helped children globally.  Its mission is to provide the best in complex and specialized family-centred care; pioneer scientific and clinical advancements; share expertise; foster an academic environment that nurtures health-care professionals; and champion an accessible, comprehensive and sustainable child health system. SickKids is proud of its vision for Healthier Children. A Better World. For more information, please visit www.sickkids.ca.

University Health Network 

University Health Network includes Toronto General and Toronto Western Hospitals, the Princess Margaret Cancer Centre and Toronto Rehabilitation Institute. The scope of research and complexity of cases at University Health Network has made it a national and international source for discovery, education and patient care. It has the largest hospital-based research program in Canada, with major research in cardiology, transplantation, neurosciences, oncology, surgical innovation, infectious diseases, genomic medicine and rehabilitation medicine. University Health Network is a research hospital affiliated with the University of Toronto. www.uhn.ca.

University of Toronto - Faculty of Medicine 

The University of Toronto Faculty of Medicine is at the heart of one of the great biomedical research, education and clinical care networks in the world. With nine fully affiliated hospitals and research institutes and 18 community-affiliated hospitals and clinical care sites, the Faculty of Medicine is a research powerhouse that offers unparalleled opportunities for its 6,800 faculty and 8,000-plus students at all levels. Nearly half of Ontario’s medical doctors and fully 25 per cent of all health and biomedical PhDs in Canada were trained by the Faculty of Medicine, which consistently ranks among the top medical schools worldwide.


OICR is an innovative cancer research and development institute dedicated to prevention, early detection, diagnosis and treatment of cancer. The Institute is an independent, not-for-profit corporation, supported by the Government of Ontario. The annual budget for OICR, its research partners and collaborators exceeds $150 million. This supports more than 1,600 investigators, clinician scientists, research staff and trainees located at its headquarters and in research institutes and academia across the Province of Ontario. OICR has key research efforts underway in small molecules, biologics, stem cells, imaging, genomics, informatics and bio-computing. For more information, please visit the website at www.oicr.on.ca.

The International Cancer Genome Consortium

The International Cancer Genome Consortium was established to bring together researchers from around the globe to comprehensively analyze the genomic, transcriptomic and epigenomic changes in 50 different tumour types or subtypes that are of clinical and societal importance across the globe. The Consortium has commitments from funding organizations in Asia, Australia, Europe, South and North America for 55 project teams in 15 jurisdictions.   

For more information please contact: 

Sandeep Dhaliwal
Communications Specialist
Samuel Lunenfeld Research Institute
Phone: 416-586-4800 ext. 2046
email: dhaliwal@lunenfeld.ca

Craig DuHamel, PhD
Vice President, Communications and Stakeholder Relations
Sunnybrook Health Sciences Centre
Phone: 416-480-4040
email: craig.duhamel@sunnybrook.ca

Matet Nebres
Senior Manager | Media Relations| Communications & Public Affairs
The Hospital for Sick Children (SickKids)
Phone: 416-813-6380
email: matet.nebres@sickkids.ca

Gillian Howard
University Health Network
Phone: 416-340-4636
email: gillian.howard@uhn.ca

Suniya Kukaswadia
Communications Assistant
Office of Strategy, Communications and External Relations
Faculty of Medicine, University of Toronto
Phone: 416-978-7752
email: suniya.kukaswadia@utoronto.ca

Christopher Needles
Manager, Strategic Communications
Ontario Institute for Cancer Research
Phone: 416-673-8505
Mobile: 416-319-5252 (mobile)
email: christopher.needles@oicr.on.ca