NEED POOP PICTURES PLEASE!

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hmw

New member
Re. All Children's: going purely 'by the numbers' compiled by the CFF care center data, they have statistics above national average, well above most of the other centers in FL. They are one of the 2 transplant centers in the state. So you are very fortunate to have access to care at such a great center! However, they do not have the top statistics in the country.

Re. Quest's genetic test, they really need to update their main webpage that shows up in Google searches to reflect the fact that their test can identify 99ish% of the 1,700 mutations that have been identified... not just 1,000. One of their main page makes their test look rather inferior compared to Genzyme or Mayo, when in fact it's superior to either of those since it does offer the option of deletion & duplication testing.

The Quest page that shows up on Google (I've seen this several times):
<a target=_blank class=ftalternatingbarlinklarge href="http://www.questdiagnostics.com/hcp/topics/cfcomplete/cfcomplete.html">Quest CF Complete</a>

What the test really is capable of:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.questdiagnostics.com/hcp/intguide/jsp/showintguidepage.jsp?fn=TH_CysticFibrosisComplete.htm">Cystic Fibrosis Complete Rare Mutation Analysis, Entire Gene Sequence</a> I was quite impressed to see this. I had no idea they offered such a comprehensive test, having only seen the link I posted first in the past. None of the genetic sequencing tests (not even Ambry) can detect all the mutations buried in the introns. I wonder how many base pairs in Quest goes when checking the introns (if they do at all.) Ambry goes something like 28...?
 
H

hmw

New member
Re. All Children's: going purely 'by the numbers' compiled by the CFF care center data, they have statistics above national average, well above most of the other centers in FL. They are one of the 2 transplant centers in the state. So you are very fortunate to have access to care at such a great center! However, they do not have the top statistics in the country.
<br />
<br />Re. Quest's genetic test, they really need to update their main webpage that shows up in Google searches to reflect the fact that their test can identify 99ish% of the 1,700 mutations that have been identified... not just 1,000. One of their main page makes their test look rather inferior compared to Genzyme or Mayo, when in fact it's superior to either of those since it does offer the option of deletion & duplication testing.
<br />
<br />The Quest page that shows up on Google (I've seen this several times):
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.questdiagnostics.com/hcp/topics/cfcomplete/cfcomplete.html">Quest CF Complete</a>
<br />
<br />What the test really is capable of:
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.questdiagnostics.com/hcp/intguide/jsp/showintguidepage.jsp?fn=TH_CysticFibrosisComplete.htm">Cystic Fibrosis Complete Rare Mutation Analysis, Entire Gene Sequence</a> I was quite impressed to see this. I had no idea they offered such a comprehensive test, having only seen the link I posted first in the past. None of the genetic sequencing tests (not even Ambry) can detect all the mutations buried in the introns. I wonder how many base pairs in Quest goes when checking the introns (if they do at all.) Ambry goes something like 28...?
 
M

martysmom

New member
Quest says they test for over 1,000 ( so I guess that could mean 1700). That is what the woman I spoke to told me about 4 months ago. I guess it really isn't the number but it is the sequencing. Marty's doc said that the just go step by step through the CFTR gene. When they don't find anything they do deletions and duplications. Quest does need to update their web page. I freaked when I saw the number of 1,004 or whatever it was. I really needed answers for my child, but the doc, nurse, and quest lady all reassured me that it was an excellent test. It is the same as the ambry amplified. I love quest because they found my son's mutations and now we have answers and I am not a nutcase anymore...lol. The think to remember, as Harriet pointed out, no test is 100%. They have no idea how many mutations are undiscovered. These test for 98-99% OF KNOWN MUTATIONS. So according to CF mutations database, there are 1795 mutations (HOLY COW).
Harriet,
I am going to PM you later or tomorrow (got to get to bed)! I want to tell you about Marty's test and what it says when I got the gene report back. I think you will find it interesting for Emily. Marty has discovered mutations, but I got quite a few pages decribing CF genetics with the test. Talk to you soon!
 
M

martysmom

New member
Quest says they test for over 1,000 ( so I guess that could mean 1700). That is what the woman I spoke to told me about 4 months ago. I guess it really isn't the number but it is the sequencing. Marty's doc said that the just go step by step through the CFTR gene. When they don't find anything they do deletions and duplications. Quest does need to update their web page. I freaked when I saw the number of 1,004 or whatever it was. I really needed answers for my child, but the doc, nurse, and quest lady all reassured me that it was an excellent test. It is the same as the ambry amplified. I love quest because they found my son's mutations and now we have answers and I am not a nutcase anymore...lol. The think to remember, as Harriet pointed out, no test is 100%. They have no idea how many mutations are undiscovered. These test for 98-99% OF KNOWN MUTATIONS. So according to CF mutations database, there are 1795 mutations (HOLY COW).
Harriet,
I am going to PM you later or tomorrow (got to get to bed)! I want to tell you about Marty's test and what it says when I got the gene report back. I think you will find it interesting for Emily. Marty has discovered mutations, but I got quite a few pages decribing CF genetics with the test. Talk to you soon!
 
M

martysmom

New member
Quest says they test for over 1,000 ( so I guess that could mean 1700). That is what the woman I spoke to told me about 4 months ago. I guess it really isn't the number but it is the sequencing. Marty's doc said that the just go step by step through the CFTR gene. When they don't find anything they do deletions and duplications. Quest does need to update their web page. I freaked when I saw the number of 1,004 or whatever it was. I really needed answers for my child, but the doc, nurse, and quest lady all reassured me that it was an excellent test. It is the same as the ambry amplified. I love quest because they found my son's mutations and now we have answers and I am not a nutcase anymore...lol. The think to remember, as Harriet pointed out, no test is 100%. They have no idea how many mutations are undiscovered. These test for 98-99% OF KNOWN MUTATIONS. So according to CF mutations database, there are 1795 mutations (HOLY COW).
<br />Harriet,
<br />I am going to PM you later or tomorrow (got to get to bed)! I want to tell you about Marty's test and what it says when I got the gene report back. I think you will find it interesting for Emily. Marty has discovered mutations, but I got quite a few pages decribing CF genetics with the test. Talk to you soon!
 
H

hmw

New member
<div class="FTQUOTE"><begin quote>Quest does need to update their web page. I freaked when I saw the number of 1,004 or whatever it was.</end quote></div>
Yeah, that was why I posted what I did. Those that know a lot about cf and how many mutations are there and look at Quest's page and take that at face value won't think Quest's test is very good- they'll think WHAT? 1,000 mutations? that's a pretty small percentage of them! ...not to mention there isn't a word on that page about doing the deletion/duplication testing. That is important to tell people... patients and parents are becoming increasingly informed nowadays and are looking for the best (we need it, after all!) You don't want people choosing to reject something based purely on dated information... this test is clearly superior to Genzyme or Mayo sequencing and you'd never know it looking at their website unless you DIG for the other article.
 
H

hmw

New member
<div class="FTQUOTE"><begin quote>Quest does need to update their web page. I freaked when I saw the number of 1,004 or whatever it was.</end quote>
Yeah, that was why I posted what I did. Those that know a lot about cf and how many mutations are there and look at Quest's page and take that at face value won't think Quest's test is very good- they'll think WHAT? 1,000 mutations? that's a pretty small percentage of them! ...not to mention there isn't a word on that page about doing the deletion/duplication testing. That is important to tell people... patients and parents are becoming increasingly informed nowadays and are looking for the best (we need it, after all!) You don't want people choosing to reject something based purely on dated information... this test is clearly superior to Genzyme or Mayo sequencing and you'd never know it looking at their website unless you DIG for the other article.
 
H

hmw

New member
<div class="FTQUOTE"><begin quote>Quest does need to update their web page. I freaked when I saw the number of 1,004 or whatever it was.</end quote>
<br />Yeah, that was why I posted what I did. Those that know a lot about cf and how many mutations are there and look at Quest's page and take that at face value won't think Quest's test is very good- they'll think WHAT? 1,000 mutations? that's a pretty small percentage of them! ...not to mention there isn't a word on that page about doing the deletion/duplication testing. That is important to tell people... patients and parents are becoming increasingly informed nowadays and are looking for the best (we need it, after all!) You don't want people choosing to reject something based purely on dated information... this test is clearly superior to Genzyme or Mayo sequencing and you'd never know it looking at their website unless you DIG for the other article.
 
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