CF centers.....

[anonymous]

So is there any kind of rankings chart, website, anything with how CF centers rank as far as overall health ect.... I have heard alot of things about different CF centers but it is mostly from our CF doctor which thinks our center is the BEST, which logically spinking I would think that which ever state or clinic that dr is from would probably think there center is the best.


Thanks!!!!!

 

[Landy]

If I remember correctly, each CF Center should have information on file on how they rated so you could ask your center for that report.
As far as a report that shows how ALL centers are rated across the country, I'm just not sure if that's available. You could ask the CFF if anything like that is available. Let us know if you happen to find anything.

 

[anonymous]

CF Centers are ranked by the CFF. Some centers will share that info with you.

The CFF, however, won't share that info because they feel it would hurt some CF centers. Duh! I wouldn't want to go to a low-ranking CF center.

Some items, to the fair, in the rankings are really indicative of a "good" CF Center. Items such as body mass index are included and for me at least, I don't think that is indicative of how good a center is.

But other items like frequency of PFT's, diabetes testing, bone density scan, etc are good indicators. Survival age is good as well. Some people argue this is highly correlated to socio-economic status, which COULD be true. But I know places like Minnesota, where they've had access to the Vest and excellent docs for years, have high life expectancy cuz it's a great center. Period.

So that's the scoop. Hopefully your center will be open with you and let you know their rank.

 

[gsplover]

My CF Center has an educational day every year. Last year they had a list of all the CF Centers and how they ranked. It was based on things like life expectancy and hospilizations. I didn't go this year because I was out of town. I believe this info was sent to all accredited CF centers. I am sure some how we can get our hands on it.