Harmonize internationally; use international standards. We don't even have a definition that is harmonized. The diagnosis, then again, sometimes depends on having the knowledge and being able to get the right experts. What happens in many other countries is they have these centres of reference where if physicians suspect a disorder that might be of a particular type, they can actually send the tests and information, and sometimes the patient, to a centre to be diagnosed.
Many of our patients, fortunately, go to the NIH and they can get it, or they go to one of the centres in the U.S. Again, this is not acceptable for Canadians to just have that; we should have centres that are connected to centres that are international centres. So you have centres of reference where you've got experts, and they are virtual centres; it doesn't mean you have to build new infrastructure there.
The other thing that can happen in terms of diagnosis is, as you say, when you have treatments; that is in fact when you do stimulate a lot of diagnosis. There are lots of reasons--more is known about the disorder; there are more incentives for people to get tested for that particular disorder. Again, we need to be connected internationally, though, because as treatments become available, we do a better job in terms of diagnosis and we learn more about the disease.
The other thing we are doing a poor job of in this country--and we don't want to keep talking about the poorness of it--is newborn screening. I think as everybody has said, many of these disorders are genetic. In the U.S., even the most impoverished states will test for at least 50 newborn diseases with one single blood drop. Internationally, newborn screening is becoming one of the most important ways of identifying genetic disorders, many of which, in fact, if they were caught at birth, could be treated from birth without the devastating effects. Everybody knows about PKU, phenylketonuria, as one of the world's profound examples. We have many other disorders of that nature, which we do not test for. Except for Saskatchewan and Ontario, most provinces are identifying fewer than 10 of these at birth, and it just takes one drop.
We need to have a national reference centre, where once you've identified that, you can get the right genetic counselling and you can get the right genetic diagnosis. Again, it means that we need to be connecting these, nationally first and then internationally. The diagnosis is oftentimes difficult, but it is in fact improving tremendously because you've got these centres of expertise.
Unfortunately, Canada doesn't take part. And we can. Europe has its arms wide open. We go over all the time. They are telling us, “Come with us.” We're an affiliate in many ways. They're waiting for us to actually provide some expertise as well. We don't want to just be beggars at the table; we also want to be there with our own expertise. We have many tremendous pockets here; we just need to do a better job of taking advantage of our expertise nationally and internationally.