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Senior Member
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Join Date: Sep 2006
Location: Tennessee
Posts: 1,213
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Senior Member
Join Date: Sep 2006
Location: Tennessee
Posts: 1,213
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Competition
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
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