Guest guest Posted July 4, 2003 Report Share Posted July 4, 2003 We signed Leila up for this too (I am in ville, FL). I think it is done by the CFF and everyone can see the results published yearly. That was my understanding, anyway. BTW, Gainesville is our old stomping grounds. My husband and I met there while at UF. We moved here 3 years ago because my husband found work here, but we still miss Gville terribly. Go Gators! We have also seen Dr.Spencer because Leila has CF and alpha-1 antitrypsin deficiency together. He is so nice and really seems on the ball. I'll be thinking of you on bronch day. Keeley & her little Gators.......Leila, 11m. wcf and A1AD, and Hadley 3yrs. nocf and noA1AD Patient List We signed up for Abby to be part of the CF Patient List. Are we allowed to see any of that information? I realize anonymity should be stressed but I would like to look at the large-scale statistics that surely have been compiled from the list. Anyone know about this? I planned to ask about it at clinic next Fri. but will be seeing a new nurse and doctor from the team. I doubt I'll think to ask it on Abby's bronch date. Thanks. Joe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2003 Report Share Posted July 4, 2003 Joe, We also signed Piper up for the list. I don't know about being able to look at the statistics, but we go for clinic on thursday and I will ask the lady that is doing it for our clinic. Katy mom to Austin 4 no CF & Piper (1 yr on the 12th) w/CF Joe wrote: We signed up for Abby to be part of the CF Patient List. Are we allowed to see any of that information? I realize anonymity should be stressed but I would like to look at the large-scale statistics that surely have been compiled from the list. Anyone know about this? I planned to ask about it at clinic next Fri. but will be seeing a new nurse and doctor from the team. I doubt I'll think to ask it on Abby's bronch date. Thanks. Joe ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
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