CF Care Centers

[anonymous]

Just wondering. I read the CF care centers are ranked. Does anyone know where I can get these statistics. I would feel kind of funny asking my doctor. Especially if they weren't ranked very high.

John

 

[anonymous]

I just found this:

When will individual center outcome data be made available to the public, particularly CF patients and families?
The CF Foundation is working to make individual care center data from the Patient Registry available to the CF community by the end of 2006. The CF Foundation's Patient Registry data shows some differences in practice patterns and outcomes across the CF Foundation-accredited care center network. However, the data are not adjusted for factors that we know impact the outcomes, such as family income. Work is being done with experts to sort out these complex variables and issues. In the meantime, you can learn more about people with CF from the CF Foundation's Patient Registry Annual Data Report, available on the CF Foundation's Web site, under publications.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.mediaprosf.com/cffwebcast/research/faqs0405.htm">http://www.mediaprosf.com/cffw.../research/faqs0405.htm</a>

 

[NoExcuses]

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[anonymous]

When I heard about these rankings awhile back, I pretty much guessed that the CF center we used was not going to just tell me where they are ranked. So instead, I asked the social worker on staff if the clinic had any specific areas in which they are working to improve. I also asked specific questions such as "I've read that the highest ranked clinics do not let kids sit in a common waiting room but that does not seem to be the case here so what are you doing to control infection transmissions here?" It got me some useful answers even if it didn't reveal exactly whether our clinic is number 2 or 20.