I agree that too many registries will water down the effort. And thank you for pointing out the differences in those initiated (especially the info about research-acceptable registry statistics).

In case anyone wonders why the Ali Center registry didn't make it, I can tell you one major reason - it was a survey along with a registry. The patient was to complete the survey - and it was entirely too long. I forget how many pages it was, but I stopped filling out the follow-up questions because of its voluminous approach. I know that's not a good excuse, but I hope future registry information seekers keep this in mind.

Peggy