Health committee  I would just mention that a lot of these registries are driven by either researchers or clinicians who have information. There needs to be much more of a push to get more information directly from patients. Information coming straight from patients is obviously going to be in s

Health committee  To follow on from that, I would slightly disagree with my colleague in that I think pre-symptomatic testing using genomics is still a little bit further away. However, the ability to have very rapid testing once the symptoms onset can help improve outcomes significantly. In the

Health committee  Artificial intelligence is another way of saying “really advanced computing”. There are advanced computational tools that can help individuals in all phases of our lives. With your Siri assistant or your Google Assistant, you can do things by talking that you previously would h

Health committee  In general, I think it's important when we look at.... All of these are important components: having the access, having the drug approved in Canada through the efforts of pharmaceutical companies doing clinical trials. Then making it available means making it reimbursable to the

Health committee  The role of the patient is huge. I know of an example of a someone in the U.S. who went from having a child who was the first in the world diagnosed with a specific rare disease—literally the first—to creating a patient group of now around 50 patients worldwide, all within the sp

Health committee  Good morning, and thank you for the opportunity to speak to you today about genetic testing and its role in enabling access to therapies for Canadians affected by rare disease. I'm a professor at the University of Toronto's Department of Computer Science and the director of the

Health committee  Ian is a great example of why genetic testing is so important and why we need to enable access to genetic testing. Since receiving treatment, Ian has become one of Canada's scholars in the area of parliamentary ethics law and has published extensively on the topic. He also hold