list?

[anonymous]

I read an article about a CF center being the best in the US. IT went on to state that CF centers are ranked but that the list is kept confidential. Does anyone know about this list and where we can view it? I would love to know where my CF center ranks.

Thanks.

 

[SeasonsOfLove]

This was discussed awhile ago on this group - I don't have time to search for it right now. I do seem to remember someone saying that the CF Foundation was planning to release the list?

 

[anonymous]

it was in an article in the New Yorker...i think the top one was in Minnesota??? i want to say that...somewhere around that area of the country. Duke was high up there i think too.

 

[miesl]

The U of Minnesota (Fairview) clinic ranked at the top of the list. Beyond that (since that's where we go) - I didn't pay much attention to any mentions on the rest of the list.

 

[CFHockeyMom]

Here's a link to the article in the New Yorker but it's not a list...

<a target=new class=ftalternatingbarlinklarge href="http://www.newyorker.com/fact/content?041206fa_fact">CF Centers</a>

 

[Mockingbird]

Ha ha! i love that quote in the article:

How long [our patients] will live remains to be seen, but I expect most of them to come to my funeral.

--Leroy Matthews

 

[anonymous]

I had heard Minnesota was at the top but how do we find out about the other CF centers???? Do you think the foundation will post it on their website?

 

[anonymous]

I doubt it. I have heard they want to keep the ranking anonymous, otherwise they are afraid they won't get accurate data reported from the clinics.....You could try to talk to your doctor to find out where your clinic falls.

Kim
40 w/cf

 

[anonymous]

There was an article in one of the Roundtable Magazine (for CF adults) about this very topic a month or so ago & someone from the CFF responded to that article in this month's issue & said that there isn't an "overall ranking scheme" for CF Centers and that it's hard to rank centers because there is alot to consider for example: They said the better outcomes at some centers could have to do with socioeconomic status & environmental factors. They went on to say for example that patients in lower socioeconomic areas appear to have worse outcomes than say patients from a more wealthy area. They also "hope to have meaningful information about the specific care centers' data available for patients and families in 2006". They also mentioned that each CF center should have a report from the CFF that shows the raw data for their practice patterns and outcomes and that you could ask your center about this report if you wished.

 

[anonymous]

i don't know about the best but Barnes Jewish Hospital in St. Louis has done the most transplants...They have a great team of dr.'s.. I am in their program now just 8 weeks out. I was number 800.


Ppppeeaaacceee!!!!

Crzy_Dimon