CFF accredited Clinics

[anonymous]

What does it mean if a CF clinic is listed as an "affiliate program" instead of just as the name of the center?

On the list, my city is listed as an "affiliate program" with the doctors name, but the small town an hour from here is listed without "affiliate program"

Does this mean anything?

 

[anonymous]

I know this has been discussed before, but hopefully someone will still help me out. Where does the CFF even publish what makes a center a CFF accredited center? Where can we find the rules? How are these reviewed? How can you see how your CFF center is doing? I know that they do national studies preparing statistics about all centers, the top 10% of centers, and each individual center, but where can we find this informatoin? Does the CFF publish how many patients they have?

 

[anonymous]

I think this is all the CFF publishes about the care centers:

The Cystic Fibrosis Foundation:

* Promotes high-quality, state-of-the-art, specialized care for individuals with CF by supporting and accrediting more than 115 care centers nationwide. These centers -- located at major teaching and community hospitals -- offer diagnosis services and comprehensive treatment for people with CF and their families.

The rest is all kept internally.

 

[NoExcuses]

.

 

[anonymous]

more from cff.org:

n 1955, there was no centralized care system for CF patients. Today, the CF Foundation accredits more than 115 care centers at major teaching and community hospitals, offering comprehensive, quality diagnosis and care nationwide -- including 94 programs specifically for adults. Care center staff includes physicians, nurses, nutritionists, respiratory therapists, social workers, genetic counselors and other medical professionals.


but what is the process for accredidation??

 

[NoExcuses]

.

 

[LouLou]

...and tell all of us.

 

[anonymous]

<b>a bit of info on adult centers:</b>

<a target=_blank class=ftalternatingbarlinklarge href="http://hctransitions.ichp.ufl.edu/CFFArticle/Cystic%20Fibrosis%20Foundation.pdf
">http://hctransitions.ichp.ufl....osis%20Foundation.pdf
</a>


Found some general info from an <a target=_blank class=ftalternatingbarlinklarge href="http://www.childsdoc.org/fall97/cf/cf.asp">article</a> in 1997:

Current guidelines include quarterly visits to the CF care center and at least annual testing to monitor disease severity and to screen for complications.
centers have two main functions: to provide state-of-the-art services for diagnosis and treatment of CF and to support research by collecting epidemiologic data, conducting clinical trials and performing basic science research.
Outline of a modern cf care center can be seen <a target=_blank class=ftalternatingbarlinklarge href="http://www.childsdoc.org/fall97/cf/fig3.jpg">here.</a>
CF centers provide comprehensive care through a multidisciplinary care team that includes physicians, nurses, social workers, nutritionists and respiratory therapists (see above figure)
CF centers offer state-of-the-art diagnostic facilities, including microbiology and pulmonary function laboratories.
he CF Foundation recommends that all CF patients have nutrition consultation at least annually; many patients will benefit from even closer monitoring. CF nutritionists offer assessment of growth, of dietary adequacy, and of the important interaction of diet and pancreatic enzyme supplements.
The CF respiratory therapist is an essential member of the care team, delivering direct care to hospitalized patients and, even more importantly, assessing, teaching and periodically reviewing the best airway clearance techniques for patients.
A skilled social worker is needed for family screening and intervention for this disease, which has significant impact on family function and finances. A genetic counselor is also an important team member; the hereditary aspects of the disorder are discussed at diagnosis, and carrier screening and prenatal diagnosis are offered as desired and appropriate.


<b>Children's Hospitals and Clinics of Minnesota identifies themselves as <a target=_blank class=ftalternatingbarlinklarge href="http://xpedio02.childrensmn.org/stellent/groups/public/@xcp/@web/@clinicsanddepts/documents/policyreferenceprocedure/web032350.asp">an affiliate care center</a> and they define that as meaning:</b>

Children's CF program is a Cystic Fibrosis Affiliate Care Center accredited by the National Cystic Fibrosis Foundation. Only institutions that meet stringent criteria and provide high-quality, specialized CF care are accredited. Patients at Children's benefit from expanded research opportunities only available at CF centers.

<b>
Good info on the annual report and what kind of info each individual care center receives is available </b><a target=_blank class=ftalternatingbarlinklarge href="http://www.childrensmemorial.org/documents/cfcnews_spring06.pdf">here:</a>
This article is PHENOMENAL. I'm ready to move to Chicago.
It appears that it is each centers CHOICE whether or not to share their specific data.

 

[ReneeP]

Someone feel free to correct me if I am wrong, but I believe that an "affiliate" center is a center that is not, in itself, a seperate CF clinic. For example, the link that was provided above for the MN clinic, is not the actual MN clinic... it is an affiliate of the MN clinic. Meaning that they work under the MN clinic. It's at a completely different hospital with different doctors. The actual MN CF clinic (with Dr. Warwick and Dr. Milla) is here:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.med.umn.edu/peds/cfcenter/home.html
">http://www.med.umn.edu/peds/cfcenter/home.html
</a>
I know where I am in TX right now our actual clinic is in San Antonio and they have several "affiliate" clinics who work under them. There is a center in Corpus Christi, not yet accredited, but working toward becoming an affiliate of the San Antonio clinic.

I have not researched what determines whether one is an "affiliate" or a clinic in it's own right so I can't answer that. I would be interested in finding out so I think I will research it later when I have more time.

This is my understanding. I know my daughter's CF dr just told me yesterday that she is working with the Corpus Christi clinic to become accredited by being an affiliate of hers. Corpus is considerably closer for me than San Antonio so I am hoping it works out.

Hope this helps...

 

[anonymous]

Do you know what city Austin is an affiliate of Renee? My daughter is newly diagnosed, but they've never mentioned a mother clinic.

 

[Ratatosk]

If you go on the CFF's site, they include Mpls. Children's as one of the accreditted clinics. I believe they a floor on their hospital designated at the CF floor.

Our local CF clinic is trying to tell us that they are going to be a satellite program of U of MN, but I find that highly doubtful the way they do things.

 

[anonymous]

The accreditation is a way that the CF Foundation guarantees that it can pimp out patients to the drug companies it is in league with.

The Foundation comes up with a marketable scheme to call a Clinic an Accredited Center by making it jump through a few hoops. Then the patients come (cause they have almost no place to go except where the arrows point), and now the Foundation and the Drug companies have a pond from which to fish. Then the Foundation collects hundreds of millions of $$$ from people they told they would help CFers. Then they go to drug companies and say, "you can either legitimately or illegitimately piss away this money on coming up with a new drug, which when it hits the market you can charge the insurance up the wazzu (despite that the development of the drug was to have been funded by the Foundation) for a pure profit." They tell the drug companies, as long as 5% of the effort is legit and produces something every 15 years to actually help, we can keep this scheme going. The CF centers are where the drug companies go to "test" their (1 in 20) placebo drugs. The Foundation also takes some of its cash and lobbies privately against stem cell research so that a real cure will never happen, as it would end their drug profiteering and the elaborate money making agenda. Much like many of the cancer drug companies do.

I should have edited this the first time I submitted it.

 

[JazzysMom]

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

The accreditation is a way that the CF Foundation guarantees that it can pimp out patients to the drug companies it is in league with.



The Foundation comes up with a marketable scheme to call a Clinic an Accredited Center by making it jump through a few hoops. Then the patients come (cause they have almost no place to go except where the arrows point), and now the Foundation and the Drug companies have a pond from which to fish. Then the Foundation collects hundreds of millions of $$$ from people they told they would help CFers. Then they go to drug companies and say, "you can either legitimately or illegitimately piss away this money on coming up with a new drug, which when it hits the market you can charge the insurance up the wazzu (despite that the development of the drug was to have been funded by the Foundation) for a pure profit." They tell the drug companies, as long as 5% of the effort is legit and produces something every 15 years to actually help, we can keep this scheme going. The CF centers are where the drug companies go to "test" their (1 in 20) placebo drugs. The Foundation also takes some of its cash and lobbies privately against stem cell research so that a real cure will never happen, as it would end their drug profiteering and the elaborate money making agenda. Much like many of the cancer drug companies do.



I should have edited this the first time I submitted it.</end quote></div>

So am I safe to say that you cant find/say anything positive about the CFF? Even if this was all true without your bias thoughts? Lets be real! There are always 3 sides to the story ~~~ left, right & total neutral~!