Thank you.
In my years of practice, and when I finally stop practising.... I'm old school. I'm paper. In my practice, when we were starting to transition to computer.... You've touched on it a bit: There's getting that information from the practitioner as well as getting the information from the patient, both of which need to be consent-informed.
I've seen where some of the registries around the world have basically said you can opt in or opt out, and it's up to the individual. That's a big concern from a consent point of view. Number one, if the patient agrees to be there, what information is being protected? Can they opt out at any particular time? How do they protect that privacy aspect? It's a huge challenge from a data-sharing point of view, not to mention from a research point of view.
I'd like comments on that.