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More than 35 million people around the world live with dementia, and that number is growing. It is estimated that a new case is diagnosed every four seconds.

A 2011 study found that in Canada alone, nearly 750,000 people were living with cognitive impairments including dementia.

Alzheimer’s disease is the most common cause of dementia, explains Dr. Barry Greenberg, director of strategy for the Toronto Dementia Research Alliance (TDRA), a consortium which includes researchers who work at the University of Toronto and among the five memory clinics at hospitals affiliated with the Faculty of Medicine.

The TDRA is just a few months away from fulfilling its first objective: the development of a standardized form that will help establish a registry of patients available for research studies. This innovation, known as the "harmonized intake form and cognitive battery", can be used on a tablet  with patients seen in the clinics. 

The database it creates will be essential for conducting research across institutions and will allow clinicians to see how diseases progress, look for early biomarkers of the disease, or study various interventions. This provides a key advantage of embedding research in clinical practice.

“This will be an extremely valuable tool, and that’s really why it was the first objective that we had as an alliance when we came together in 2009," says Greenberg, who is also director of Neuroscience, Drug Discovery and Development for the University Health Network.

The TDRA includes researchers at the University of Toronto and five affiliated memory and dementia clinics based at Baycrest, the Centre for Addiction and Mental Health (CAMH), St. Michael’s Hospital, Sunnybrook Hospital and the University Health Network. Its goal is to foster greater understanding of prevention, best care and treatment for neurodegenerative diseases including Alzheimer’s disease, Frontal-temporal Degeneration, Vascular Cognitive impairment and dementias related to Parkinson’s disease. 

The new tool will be used by TDRA clinics, which see approximately 6,000 patients each year — a third of them new. The information will help manage a patient’s ongoing care and help identify their availability for future research studies.

Even before it’s officially launched, other organizations are already taking notice.

The TDRA has been in discussions with the Ontario Brain Institute’s Neurodegenerative Disease Research Initiative, the Canadian Institutes of Health Research’s Collaboration on Neurodegeneration in Aging, as well as a few Alzheimer’s centers in the United States. 

"This is just one example of the kinds of resources that we can bring together as part of the TDRA,” says Greenberg, who also points out that the alliance’s last four grant applications have all been approved for funding.

The new tool is undergoing user-testing that should be done by the end of the year. The harmonized intake form and cognitive assessment tool should be ready for beta testing in the TDRA’s memory and dementia clinics in early 2014.

Erin Howe is a writer with the Faculty of Medicine at the University of Toronto.