Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Hi I have a question... Why don't all CF centers use Ambry Genetics to do all their CF testing...it takes only a few weeks apposed to 6 weeks with basic testing and it can screen for many more mutations? Also why in states where they do Newborn screening, don't they use the Ambry Test? I mean so many Cf patients have one common muatation and one unknown..why not automatically do the extensive test? Is it the fact that CF centers would be inundated with new CF patients and not know what to do? I am not trying to be sarcastic but you know what I mean. Also which states require Newborn screening and how / why did they start it? Becki YOUR FAVORITE LilGooberGirl YOUNGLUNG EMAIL SUPPORT LIST www.topica.com/lists/younglung Pediatric Interstitial Lung Disease Society http://groups.yahoo.com/group/InterstitialLung_Kids/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 Hi Becky, I think the Ambry test is way too expensive and specialized for a neonatal test. This has to be a quick and cheap test or it won't be done at all. But I am totally with you that the Ambry test (or any other DNA test that covers all known mutations) has to become the gold standard at all CF centers. Don't know whether the insurance companies or the CFF are the huge road block in this case. But it's ridiculous that the docs rather fiddle around with multiple sweat tests and run a genetic test afterwards ( " just to make sure " ) instead of ordering a full DNA test at once. Peace Torsten Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 Hi Becky, I think the Ambry test is way too expensive and specialized for a neonatal test. This has to be a quick and cheap test or it won't be done at all. But I am totally with you that the Ambry test (or any other DNA test that covers all known mutations) has to become the gold standard at all CF centers. Don't know whether the insurance companies or the CFF are the huge road block in this case. But it's ridiculous that the docs rather fiddle around with multiple sweat tests and run a genetic test afterwards ( " just to make sure " ) instead of ordering a full DNA test at once. Peace Torsten Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 Hi Becky, I think the Ambry test is way too expensive and specialized for a neonatal test. This has to be a quick and cheap test or it won't be done at all. But I am totally with you that the Ambry test (or any other DNA test that covers all known mutations) has to become the gold standard at all CF centers. Don't know whether the insurance companies or the CFF are the huge road block in this case. But it's ridiculous that the docs rather fiddle around with multiple sweat tests and run a genetic test afterwards ( " just to make sure " ) instead of ordering a full DNA test at once. Peace Torsten Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 In a message dated 12/3/2002 12:14:57 AM Central Standard Time, littlezoester@... writes: > Pennsylvania started screening newborns approx. 2 years ago, I'm not sure > why > they started but it's a good thing > In Iowa there are asked if they want it done but it is not required. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 In a message dated 12/3/2002 12:14:57 AM Central Standard Time, littlezoester@... writes: > Pennsylvania started screening newborns approx. 2 years ago, I'm not sure > why > they started but it's a good thing > In Iowa there are asked if they want it done but it is not required. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 I think it should be but the law ought to have in it that the insurance companies that are licensed in that state CANNOT DROP THEM or REFUSE them insurance. -that is what happened to my daughter in N.C. 18 years ago. She was DX at birth due to her mecominum iliues.................. LOVE & HUGS, GRDMBEV Re: Cf Genetics Questions In a message dated 12/3/2002 12:14:57 AM Central Standard Time, littlezoester@... writes: > Pennsylvania started screening newborns approx. 2 years ago, I'm not > sure > why > they started but it's a good thing > In Iowa there are asked if they want it done but it is not required. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 I think it should be but the law ought to have in it that the insurance companies that are licensed in that state CANNOT DROP THEM or REFUSE them insurance. -that is what happened to my daughter in N.C. 18 years ago. She was DX at birth due to her mecominum iliues.................. LOVE & HUGS, GRDMBEV Re: Cf Genetics Questions In a message dated 12/3/2002 12:14:57 AM Central Standard Time, littlezoester@... writes: > Pennsylvania started screening newborns approx. 2 years ago, I'm not > sure > why > they started but it's a good thing > In Iowa there are asked if they want it done but it is not required. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 I think it should be but the law ought to have in it that the insurance companies that are licensed in that state CANNOT DROP THEM or REFUSE them insurance. -that is what happened to my daughter in N.C. 18 years ago. She was DX at birth due to her mecominum iliues.................. LOVE & HUGS, GRDMBEV Re: Cf Genetics Questions In a message dated 12/3/2002 12:14:57 AM Central Standard Time, littlezoester@... writes: > Pennsylvania started screening newborns approx. 2 years ago, I'm not > sure > why > they started but it's a good thing > In Iowa there are asked if they want it done but it is not required. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 Gosh, I hadn't heard that .Thanks for the up front info , LOVE & HUGS, GRDMBEV Re: Re: Cf Genetics Questions I personally would not go to a CF center that even ordered a sweat test unless the blood test showed unknown mutations. And I was told it was the CFF that is behind the power curve on this issue. Lori in Florida Re: Cf Genetics Questions Hi Becky, I think the Ambry test is way too expensive and specialized for a neonatal test. This has to be a quick and cheap test or it won't be done at all. But I am totally with you that the Ambry test (or any other DNA test that covers all known mutations) has to become the gold standard at all CF centers. Don't know whether the insurance companies or the CFF are the huge road block in this case. But it's ridiculous that the docs rather fiddle around with multiple sweat tests and run a genetic test afterwards ( " just to make sure " ) instead of ordering a full DNA test at once. Peace Torsten Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 Gosh, I hadn't heard that .Thanks for the up front info , LOVE & HUGS, GRDMBEV Re: Re: Cf Genetics Questions I personally would not go to a CF center that even ordered a sweat test unless the blood test showed unknown mutations. And I was told it was the CFF that is behind the power curve on this issue. Lori in Florida Re: Cf Genetics Questions Hi Becky, I think the Ambry test is way too expensive and specialized for a neonatal test. This has to be a quick and cheap test or it won't be done at all. But I am totally with you that the Ambry test (or any other DNA test that covers all known mutations) has to become the gold standard at all CF centers. Don't know whether the insurance companies or the CFF are the huge road block in this case. But it's ridiculous that the docs rather fiddle around with multiple sweat tests and run a genetic test afterwards ( " just to make sure " ) instead of ordering a full DNA test at once. Peace Torsten Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 , Glad Clinton was good for SOMEthing! Aunt B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 , Glad Clinton was good for SOMEthing! Aunt B Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.