How do you find out how good your cf center is??

A

anonymous

New member
I was just wondering if anyone knows how to find out what your cf center scores compared to others in the country. I was reading an article on the internet from 2005 and it stated that the foundation was going to release all the cf centers scores in 2006.....but I cant find out how to get this information. I am curious because I am not so sure our clinic scores all that well....my son's doctor told me a few months back that on paper our clinic does not look that good but he stated that it had alot to do with demographics.
Thanks
Carrie
 
A

anonymous

New member
The Minnesota clinic is #1 in its statistics- best survival rate at just under 50 being the median age. We took our son Aidan out there in July. All the stats should be available around Christmas time or so our CF center told us. It will be available on the CFF website with graphs and such...
Megan
 
A

anonymous

New member
From what we were told, the CFF is definetly releasing the info around Dec/Jan coming up. Our CF center showed us some of the graphs and how it will be released. It is not really clear cut- like a ranking numbered 1-117. It is more like spilt up into categories and ages.
Example: Nutritional status ages 1-6 and then it will show where your center stands.
That is what our CF center has described to us thus far. We are part of the Quality Improvement Initiative at our center. Honestly, I have been to the "supposedly best" with Warwick and our clinic does not do do things too differently. Besides the fact that Warwick told me Aidan was too fat and our CF clinic pushes and pushes for more weight. Not a problem now b/c Aidan has decided not to eat lately anyway! Amy- good luck at your appt with Warwick.

Megan
 
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