We did look into this. During the best brains exchange event, colleagues from the U.S., the U.K and the Netherlands were able to provide more information about how they were able to implement and the challenges they faced. I will give you some concrete aspects that were discussed.
For the U.S., for instance, their registry is for research purposes and not for traceability purposes, and it's not something that is mandated. It's basically something for which a patient would need to give consent. There is really nothing to oblige patients to enrol. They have a low participation rate in the U.S., and because of that they aren't able at this time to fully leverage their registry for research purposes and/or for signal detection. This is one of the aspects that was communicated to us.
In the U.K., for instance, they had the registry back in the 2000s. They had to cancel their registry because, at the time, they had a very low participation rate and were unable to leverage their registry for research purposes. They started a registry again just a few years ago. The main change between then and now is that they have a single system for patient information. It is not decentralized anymore. They have better ways to ensure data sharing and the full participation of patients in their registry, which is not the case in Canada.
We were able to learn more about some of their challenges, what their journey has been and how they have been able to implement or, in some cases, fully change the approach they had taken before.