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Toronto (Dec. 12, 2012) - His Excellency the Right Honourable David Johnston, Governor General of Canada, opened The Dalglish Family Hearts & Minds Clinic – the world's first comprehensive, interdisciplinary clinic devoted to adults with 22q11.2 Deletion Syndrome(22q11.2DS) and their families. Joined by the Honourable Deborah Matthews, Minister of Health and Long-Term Care, the opening took place at University Health Network's Toronto General Hospital.
It's estimated that 15,000 to 30,000 Canadians have the genetic deletion but many don't know this- as patients often go undiagnosed.
"The genetic testing for this is still a relatively recent practice and so many clinicians do not know about the condition," explains Dr. Anne Bassett, Director, The Dalglish Family Hearts and Minds Clinic, University Health Network (UHN). "Diagnosis becomes even harder when you realize that the syndrome is like a chameleon because each patient will have a different combination of health conditions that can be present at birth or arise later in life."
Previously referred to as velo-cardio-facial or DiGeorge syndrome, 22q11.2DS is a genetic condition associated with a missing piece of DNA on chromosome 22. The effects of the syndrome vary from patient to patient but are commonly linked to more than 40 health conditions. These conditions can involve birth defects of the heart and palate; psychiatric and neurological conditions such as anxiety, schizophrenia and seizures; as well as endocrinological conditions like thyroid disease, low-calcium and more rarely diabetes. Learning difficulties are also common with 22q11.2DS.
"Because 22q11.2DS can affect nearly every part of the body, patients and their families often need to visit multiple hospitals to see several specialists," says Dr. Bassett, who holds The Dalglish Family Chair in 22q11.2 Deletion Syndrome and Canada Research Chair in Schizophrenia Genetics and Genomic Disorders. "We'll be a one-stop-shop for patients with 22q11.2DS and their families – providing them the specialized, collaborative and multidisciplinary care that meets their unique needs, all under one roof."
The Dalglish Family Hearts & Minds Clinic was made possible by The W. Garfield Weston Foundation's generous $4 million donation and is scheduled to receive patients in January 2013.
The Dalglish Family Hearts & Minds Clinic will offer expert integrated care with an in-house clinical team – including a nurse, dietitian, social worker, and doctors from multiple specialties including psychiatry, cardiology, endocrinology, neurology and genetics. Dr. Alan Fung, Co-Director, and Sarah Flogen, Nurse Manager, will join Dr. Bassett to form the clinic's leadership team.
"We'll also collaborate with the Hospital for Sick Children to improve the care of youth with 22q11.2DS as they transition from paediatric to adult health care," says Dr. Fung, who is also an Assistant Professor of Psychiatry at the University of Toronto. "Our goal is for the clinic to serve as a model of integrated care not just for 22q11.2DS but also for other complex conditions"
Along with their clinical focus, The Dalglish Family Hearts & Minds Clinic's staff will embrace research and education. Researchers will explore the range of clinical challenges that 22q11.2DS presents, particularly in psychiatric, cardiac and neurological specialties, and translate cutting-edge findings to directly benefit patients and families in the clinic and influence global health care practices.
Support of The W. Garfield Weston Foundation will advance the clinic's research platform by contributing to the Peter Munk Cardiac Centre Biobank and database and enabling world-leading research. Banking tissue samples may allow researchers to identify potential molecular therapies for patients with 22q11.2DS.
"By having the vision to invest in leading research, The W. Garfield Weston Foundation provides us with the resources to sequence all of the genes in hundreds of patients with 22q11.2DS," says Dr. Barry Rubin, Medical Director of the Peter Munk Cardiac Centre and Professor of Surgery, University of Toronto. "This may give us insights into why some patients are born with heart defects, while others go on to develop psychiatric disorders, like schizophrenia."
"Along with supporting psychiatric and cardiac genetic research, this innovative gift will also support The Dalglish Family Fellowship in 22q11.2DS, allowing clinicians or scientists to pursue advanced research training in 22q11.2DS," says Dr. Sidney Kennedy, Psychiatrist-in-Chief, UHN and Professor of Psychiatry at the University of Toronto.
Along with her chairs, Dr. Bassett is a Professor of Psychiatry at the University of Toronto, Associate Staff, Division of Cardiology, UHN and Director, Clinical Genetics Research Program, Centre for Addiction & Mental Health.
The W. Garfield Weston Foundation is a private Canadian family foundation, established in the 1950's by Willard Garfield Weston and his wife Reta. In 1924 Garfield inherited his father's company and during his life established baking and retail businesses throughout Canada and in many parts of the world. The founders believed that as the funds are generated through the hard work and success of his Canadian companies, grants should be given in Canada for the benefit of Canadians. For three generations, The W. Garfield Weston Foundation has maintained a family tradition of supporting charitable organizations across Canada. Today the Foundation directs the majority of its funds to projects in the fields of land conservation, education, and scientific research in Canada's North.
University Health Network consists of Toronto General, Toronto Western, Princess Margaret Hospitals and the 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, and genomic medicine. University Health Network is a research hospital affiliated with the University of Toronto.
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