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CF Centers/Clinics

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blondelawyer

New member
I read the New Yorker article about the "top" CF centers and have also seen some other sites that mention Top 10 centers, etc., but have been unable to find any such list or useful information. Can anyone help me with this?

We moved to a new area about 4 years ago and I have some issues with the current clinic. For example, it seems like my husband (the patient) is the one that has to ask the doctors to give him ideas on how to improve his health, etc. I feel like they are doing more "crisis management" than being proactive and having a long term focus. Anyone else experience this?
 
B

blondelawyer

New member
I read the New Yorker article about the "top" CF centers and have also seen some other sites that mention Top 10 centers, etc., but have been unable to find any such list or useful information. Can anyone help me with this?

We moved to a new area about 4 years ago and I have some issues with the current clinic. For example, it seems like my husband (the patient) is the one that has to ask the doctors to give him ideas on how to improve his health, etc. I feel like they are doing more "crisis management" than being proactive and having a long term focus. Anyone else experience this?
 
B

blondelawyer

New member
I read the New Yorker article about the "top" CF centers and have also seen some other sites that mention Top 10 centers, etc., but have been unable to find any such list or useful information. Can anyone help me with this?

We moved to a new area about 4 years ago and I have some issues with the current clinic. For example, it seems like my husband (the patient) is the one that has to ask the doctors to give him ideas on how to improve his health, etc. I feel like they are doing more "crisis management" than being proactive and having a long term focus. Anyone else experience this?
 
N

NoExcuses

New member
Good article, isn't it?

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CareCenterData/
">http://www.cff.org/LivingWithC...twork/CareCenterData/
</a>
This is as close as you will get to the CFF giving out #s about CF centers. They don't rank in this link, but they give you information about FEV1's, BMI, etc. Since this information was just published this year for the 1st time, CFF agreed not to show "rankings" but reveal "data."

This should help you in your search for a new center...
 
N

NoExcuses

New member
Good article, isn't it?

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CareCenterData/
">http://www.cff.org/LivingWithC...twork/CareCenterData/
</a>
This is as close as you will get to the CFF giving out #s about CF centers. They don't rank in this link, but they give you information about FEV1's, BMI, etc. Since this information was just published this year for the 1st time, CFF agreed not to show "rankings" but reveal "data."

This should help you in your search for a new center...
 
N

NoExcuses

New member
Good article, isn't it?

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CareCenterData/
">http://www.cff.org/LivingWithC...twork/CareCenterData/
</a>
This is as close as you will get to the CFF giving out #s about CF centers. They don't rank in this link, but they give you information about FEV1's, BMI, etc. Since this information was just published this year for the 1st time, CFF agreed not to show "rankings" but reveal "data."

This should help you in your search for a new center...
 
B

blondelawyer

New member
Thanks for the link...very interesting. A bit discouraging to see the numbers for our current center. Maybe having this data available will spur better care.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sakasuka</b></i>

Good article, isn't it?



<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CareCenterData/
">http://www.cff.org/LivingWithC...CareCenterData/
</a>


This is as close as you will get to the CFF giving out #s about CF centers. They don't rank in this link, but they give you information about FEV1's, BMI, etc. Since this information was just published this year for the 1st time, CFF agreed not to show "rankings" but reveal "data."



This should help you in your search for a new center...</end quote></div>
 
B

blondelawyer

New member
Thanks for the link...very interesting. A bit discouraging to see the numbers for our current center. Maybe having this data available will spur better care.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sakasuka</b></i>

Good article, isn't it?



<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CareCenterData/
">http://www.cff.org/LivingWithC...CareCenterData/
</a>


This is as close as you will get to the CFF giving out #s about CF centers. They don't rank in this link, but they give you information about FEV1's, BMI, etc. Since this information was just published this year for the 1st time, CFF agreed not to show "rankings" but reveal "data."



This should help you in your search for a new center...</end quote></div>
 
B

blondelawyer

New member
Thanks for the link...very interesting. A bit discouraging to see the numbers for our current center. Maybe having this data available will spur better care.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sakasuka</b></i>

Good article, isn't it?



<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CareCenterData/
">http://www.cff.org/LivingWithC...CareCenterData/
</a>


This is as close as you will get to the CFF giving out #s about CF centers. They don't rank in this link, but they give you information about FEV1's, BMI, etc. Since this information was just published this year for the 1st time, CFF agreed not to show "rankings" but reveal "data."



This should help you in your search for a new center...</end quote></div>
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>blondelawyer</b></i>

Thanks for the link...very interesting. A bit discouraging to see the numbers for our current center. Maybe having this data available will spur better care.

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sakasuka</b></i>


Good article, isn't it?


<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithC...CareCenterData/
">"><a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CareCenterData/
<br ">http://www.cff.org/LivingWithC...ata/
</a>
</a>

This is as close as you will get to the CFF giving out #s about CF centers. They don't rank in this link, but they give you information about FEV1's, BMI, etc. Since this information was just published this year for the 1st time, CFF agreed not to show "rankings" but reveal "data."

This should help you in your search for a new center...</end quote></div></end quote></div>

It can be discouraging, but I urge you to not put all your stock in those statistics. Many things can influence those numbers. Anything from HMO's limiting services to actual patient non compliance. Use this as a tool when making decisions. As an example I wouldnt give up the relationship I have with everyone at my clinic or the hospital floor unless MY care itself was in the toilet.
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>blondelawyer</b></i>

Thanks for the link...very interesting. A bit discouraging to see the numbers for our current center. Maybe having this data available will spur better care.

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sakasuka</b></i>


Good article, isn't it?


<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithC...CareCenterData/
">"><a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CareCenterData/
<br ">http://www.cff.org/LivingWithC...ata/
</a>
</a>

This is as close as you will get to the CFF giving out #s about CF centers. They don't rank in this link, but they give you information about FEV1's, BMI, etc. Since this information was just published this year for the 1st time, CFF agreed not to show "rankings" but reveal "data."

This should help you in your search for a new center...</end quote></div></end quote></div>

It can be discouraging, but I urge you to not put all your stock in those statistics. Many things can influence those numbers. Anything from HMO's limiting services to actual patient non compliance. Use this as a tool when making decisions. As an example I wouldnt give up the relationship I have with everyone at my clinic or the hospital floor unless MY care itself was in the toilet.
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>blondelawyer</b></i>

Thanks for the link...very interesting. A bit discouraging to see the numbers for our current center. Maybe having this data available will spur better care.

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sakasuka</b></i>


Good article, isn't it?


<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithC...CareCenterData/
">"><a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CareCenterData/
<br ">http://www.cff.org/LivingWithC...ata/
</a>
</a>

This is as close as you will get to the CFF giving out #s about CF centers. They don't rank in this link, but they give you information about FEV1's, BMI, etc. Since this information was just published this year for the 1st time, CFF agreed not to show "rankings" but reveal "data."

This should help you in your search for a new center...</end quote></div></end quote></div>

It can be discouraging, but I urge you to not put all your stock in those statistics. Many things can influence those numbers. Anything from HMO's limiting services to actual patient non compliance. Use this as a tool when making decisions. As an example I wouldnt give up the relationship I have with everyone at my clinic or the hospital floor unless MY care itself was in the toilet.
 
G

getahobby

New member
Like somebody else said; don't take these statistics too seriously. Larger centers are often "penalized" in these statistics for a couple of reasons. For example, if a center is a transplant center then the numbers are going to take a hit from the "sicker" patients. Also, sometimes other centers will send their sicker patients to a larger center that is nearby to see if that larger center can be more help.

The numbers are interesting though.
 
G

getahobby

New member
Like somebody else said; don't take these statistics too seriously. Larger centers are often "penalized" in these statistics for a couple of reasons. For example, if a center is a transplant center then the numbers are going to take a hit from the "sicker" patients. Also, sometimes other centers will send their sicker patients to a larger center that is nearby to see if that larger center can be more help.

The numbers are interesting though.
 
G

getahobby

New member
Like somebody else said; don't take these statistics too seriously. Larger centers are often "penalized" in these statistics for a couple of reasons. For example, if a center is a transplant center then the numbers are going to take a hit from the "sicker" patients. Also, sometimes other centers will send their sicker patients to a larger center that is nearby to see if that larger center can be more help.

The numbers are interesting though.
 
O

OperaMama

New member
see if this link works for the article



http://www.ahip.org/Links/Paperless/2005/BuildingBridges/materials3/Gawande_a.pdf



I read it when it came out, a whole year before our son's diagnosis... Still had it in a pile in the guest room!
 
O

OperaMama

New member
see if this link works for the article



http://www.ahip.org/Links/Paperless/2005/BuildingBridges/materials3/Gawande_a.pdf



I read it when it came out, a whole year before our son's diagnosis... Still had it in a pile in the guest room!
 
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