T
tarheel
Guest
FYI, I'd kill for CFF to be willing to share theirs given the amount of data they hold onto, but I don't see it happening anytime soon.<br>-----I TOTALLY agree. I am such a statistics person. And if we are part of the CF registry- why can't we see how each center is doing patient by patient and really the hard numbers.<br>Plus I just feel that some of the "statistics" the CFF tries to use now (*clears throat* life expectancy) don't really show the struggle that CF is- but rather further the case of "Statistics lie and liars use statistics" even though that is not what I would personally like to believe.<br>But the other thing to keep in mind that is so frustrating is that everyone cooks the books.