I think the pressure in terms of breaking that silo is happening organically. We've already seen the pan-Canadian Pharmaceutical Alliance recognizing that by negotiating together they can get not only better pricing but also better criteria in terms of making that happen. A patient registry for rare diseases is not something unique to Canada.
In Canada we have amazing resources in terms of being able to do that. We have some of the very best genomic sequencing labs in Canada. We can actually register patients according to identified phenotype, the physical features of a rare disease, and we can identify them in terms of their actual genetic sequence so that we can know what these patients' defects are that are leading to a particular rare disease. We have a great program in Canada, a matchmaking program where you can actually match up patients who have similar genetic sequencing that are defects and begin to say, “Oh, my gosh, these are families here”. I think we have a huge capacity in Canada to develop very rich registries. I travel to international conferences, and people point to Canada and say that we have the most amazing system and the greatest possibility of being able to build those registries.
We also have great collaboration among our specialists. We have metabolic specialists who work together. Most of our pediatric centres work together. We're big enough that we can have these, but we're small enough that our researchers, our clinicians, and our scientists actually know each other. For the most part, they actually like each other. They actually want to collaborate together.
We have all of that capacity. It means then that if we have a treatment coming up, patients who are already registered—we've talked about Bethanys Hope—can be entered into the clinical trials early on. We have seen examples of that already happening. I think the possibilities are huge here in Canada. We just have to be able to harness them. CIHR has done huge investments in terms of personalized medicines and supporting these kinds of disease programs. What we lack is the actual incentives for companies to actually set up that research and carry it to the next level here.