New Webpage from CFF for Positive Newborn Screening

[LisaGreene]

Subject heading: New Resource to Help Parents Deal with False Positives in Newborn Screening

Dear Colleagues,

The Cystic Fibrosis Foundation is excited to announce a vital new resource for parents whose infants receive a positive newborn screen for cystic fibrosis (CF) [www.cff.org/AboutCF/Testing/NewbornScreening/]. You may be surprised to learn that 90 percent of positive CF test results are false positives - affecting about 10,000 babies each year.

These parents will have to wait for what seems an eternity (several days to several weeks) before a diagnostic test can verify results from the newborn screen.

To help parents deal with the enormous stress associated with a positive screen for CF - a life-threatening disease - we have developed a Web resource with the help of medical experts in the fields of CF, genetics and newborn screening - as well as input from experienced CF families. Our site includes information on:
. Newborn Screening Basics - Overview of the nationwide program to find babies born with certain health conditions.
. What is CF - Explains what CF is and why it is important to screen for CF at birth.
. Screening for CF - Explains the test, why a second test may be needed and how each state screens newborns for CF.
. Understanding the Results - Answers questions you may have about the results of a newborn screen for CF.
. Sweat Test for Newborns - Explains what a sweat test is and why newborns may need it.
. My Baby Has CF - Tells you what to do and whom to contact if your baby has CF.
. For Health Care Providers - Provides information about CF newborn screening for health care professionals.

Our hope is that as many people as possible will benefit from this new resource. We ask you to spread the word. Please take a moment to check out the site [www.cff.org/AboutCF/Testing/NewbornScreening], and don't hesitate to contact us with any questions or comments. Thank you in advance for your support.

Best,
Leslie Hazle, MS, RN, CPN
Director of Patient Resources
Cystic Fibrosis Foundation
800 FIGHT CF
www.cff.org

 

[LisaGreene]

Subject heading: New Resource to Help Parents Deal with False Positives in Newborn Screening

Dear Colleagues,

The Cystic Fibrosis Foundation is excited to announce a vital new resource for parents whose infants receive a positive newborn screen for cystic fibrosis (CF) [www.cff.org/AboutCF/Testing/NewbornScreening/]. You may be surprised to learn that 90 percent of positive CF test results are false positives - affecting about 10,000 babies each year.

These parents will have to wait for what seems an eternity (several days to several weeks) before a diagnostic test can verify results from the newborn screen.

To help parents deal with the enormous stress associated with a positive screen for CF - a life-threatening disease - we have developed a Web resource with the help of medical experts in the fields of CF, genetics and newborn screening - as well as input from experienced CF families. Our site includes information on:
. Newborn Screening Basics - Overview of the nationwide program to find babies born with certain health conditions.
. What is CF - Explains what CF is and why it is important to screen for CF at birth.
. Screening for CF - Explains the test, why a second test may be needed and how each state screens newborns for CF.
. Understanding the Results - Answers questions you may have about the results of a newborn screen for CF.
. Sweat Test for Newborns - Explains what a sweat test is and why newborns may need it.
. My Baby Has CF - Tells you what to do and whom to contact if your baby has CF.
. For Health Care Providers - Provides information about CF newborn screening for health care professionals.

Our hope is that as many people as possible will benefit from this new resource. We ask you to spread the word. Please take a moment to check out the site [www.cff.org/AboutCF/Testing/NewbornScreening], and don't hesitate to contact us with any questions or comments. Thank you in advance for your support.

Best,
Leslie Hazle, MS, RN, CPN
Director of Patient Resources
Cystic Fibrosis Foundation
800 FIGHT CF
www.cff.org

 

[LisaGreene]

Subject heading: New Resource to Help Parents Deal with False Positives in Newborn Screening
<br />
<br />Dear Colleagues,
<br />
<br />The Cystic Fibrosis Foundation is excited to announce a vital new resource for parents whose infants receive a positive newborn screen for cystic fibrosis (CF) [www.cff.org/AboutCF/Testing/NewbornScreening/]. You may be surprised to learn that 90 percent of positive CF test results are false positives - affecting about 10,000 babies each year.
<br />
<br />These parents will have to wait for what seems an eternity (several days to several weeks) before a diagnostic test can verify results from the newborn screen.
<br />
<br />To help parents deal with the enormous stress associated with a positive screen for CF - a life-threatening disease - we have developed a Web resource with the help of medical experts in the fields of CF, genetics and newborn screening - as well as input from experienced CF families. Our site includes information on:
<br />. Newborn Screening Basics - Overview of the nationwide program to find babies born with certain health conditions.
<br />. What is CF - Explains what CF is and why it is important to screen for CF at birth.
<br />. Screening for CF - Explains the test, why a second test may be needed and how each state screens newborns for CF.
<br />. Understanding the Results - Answers questions you may have about the results of a newborn screen for CF.
<br />. Sweat Test for Newborns - Explains what a sweat test is and why newborns may need it.
<br />. My Baby Has CF - Tells you what to do and whom to contact if your baby has CF.
<br />. For Health Care Providers - Provides information about CF newborn screening for health care professionals.
<br />
<br />Our hope is that as many people as possible will benefit from this new resource. We ask you to spread the word. Please take a moment to check out the site [www.cff.org/AboutCF/Testing/NewbornScreening], and don't hesitate to contact us with any questions or comments. Thank you in advance for your support.
<br />
<br />Best,
<br />Leslie Hazle, MS, RN, CPN
<br />Director of Patient Resources
<br />Cystic Fibrosis Foundation
<br />800 FIGHT CF
<br />www.cff.org
<br />

 

[Mommafirst]

What a smart idea!!! I'm sure there will be scared newbies that are in flux and will find this very helpful!!

 

[Mommafirst]

What a smart idea!!! I'm sure there will be scared newbies that are in flux and will find this very helpful!!

 

[Mommafirst]

What a smart idea!!! I'm sure there will be scared newbies that are in flux and will find this very helpful!!

 

[LouLou]

I'm not overly thrilled with the way it's presented. For example, take CT they describe the testing as "Fully" testing for the mutation of the cf gene" through IRT AND Genetic testing. Correct me if I'm wrong, but I don't think any state does genetic sequencing at the NBS level and to me that is the only type of testing that should be associated with FULLY evaluating the possibility of cf.

The mention of genetic testing is in reference more to carrier status than cf status which I get. You can't diagnose cf with genetics alone but I think people are smart enough that they shouldn't sugar coat it. Why not just give the cf consortium definition of cf. Is this handled somewhere else on the site?

Finally, they make a mention to CRMS and how people should visit the page to learn more. Does anyone have a link to this page?

 

[LouLou]

I'm not overly thrilled with the way it's presented. For example, take CT they describe the testing as "Fully" testing for the mutation of the cf gene" through IRT AND Genetic testing. Correct me if I'm wrong, but I don't think any state does genetic sequencing at the NBS level and to me that is the only type of testing that should be associated with FULLY evaluating the possibility of cf.

The mention of genetic testing is in reference more to carrier status than cf status which I get. You can't diagnose cf with genetics alone but I think people are smart enough that they shouldn't sugar coat it. Why not just give the cf consortium definition of cf. Is this handled somewhere else on the site?

Finally, they make a mention to CRMS and how people should visit the page to learn more. Does anyone have a link to this page?

 

[LouLou]

I'm not overly thrilled with the way it's presented. For example, take CT they describe the testing as "Fully" testing for the mutation of the cf gene" through IRT AND Genetic testing. Correct me if I'm wrong, but I don't think any state does genetic sequencing at the NBS level and to me that is the only type of testing that should be associated with FULLY evaluating the possibility of cf.
<br />
<br />The mention of genetic testing is in reference more to carrier status than cf status which I get. You can't diagnose cf with genetics alone but I think people are smart enough that they shouldn't sugar coat it. Why not just give the cf consortium definition of cf. Is this handled somewhere else on the site?
<br />
<br />Finally, they make a mention to CRMS and how people should visit the page to learn more. Does anyone have a link to this page?

 

[LisaGreene]

Thx for taking the time to look at this and give feedback. I'll share your thoughts with the design board. As far as the link to the CRMS, it's coming hopefully soon.

This is a work in progress and has taken a year to do even this far. I'll keep you posted and again, thx so much for your thoughts.

 

[LisaGreene]

Thx for taking the time to look at this and give feedback. I'll share your thoughts with the design board. As far as the link to the CRMS, it's coming hopefully soon.

This is a work in progress and has taken a year to do even this far. I'll keep you posted and again, thx so much for your thoughts.

 

[LisaGreene]

Thx for taking the time to look at this and give feedback. I'll share your thoughts with the design board. As far as the link to the CRMS, it's coming hopefully soon.
<br />
<br />This is a work in progress and has taken a year to do even this far. I'll keep you posted and again, thx so much for your thoughts.

 

[LisaGreene]

"You can't diagnose cf with genetics alone but I think people are smart enough that they shouldn't sugar coat it."

Oh Lauren- I do want to say- my kids were diagnosed with genetics alone. Neither has ever had the sweat test. Both are D508 so that made it easy but it is possible.

Talk soon, Lisa

 

[LisaGreene]

"You can't diagnose cf with genetics alone but I think people are smart enough that they shouldn't sugar coat it."

Oh Lauren- I do want to say- my kids were diagnosed with genetics alone. Neither has ever had the sweat test. Both are D508 so that made it easy but it is possible.

Talk soon, Lisa

 

[LisaGreene]

"You can't diagnose cf with genetics alone but I think people are smart enough that they shouldn't sugar coat it."
<br />
<br />Oh Lauren- I do want to say- my kids were diagnosed with genetics alone. Neither has ever had the sweat test. Both are D508 so that made it easy but it is possible.
<br />
<br />Talk soon, Lisa

 

[mneville]

I thought it was interesting and probably would have helped me when Aidan was diagnosed through newborn screening. However, I emailed the National CFF about the lack of information regarding PGD on their website. They said that was not part of their mission statement. However, this new section seems like the perfect place to mention that two carriers can have a healthy baby using IVF/PGD. We used it after researching for years because nobody in the CF world mentioned it to us. We have a healthy 3 year old and I've been contacted by LOTS of mothers who want that information. The CFF should have something about it. The CFF website is a resource for families who are affected by CF and women want this information. Megan

 

[mneville]

I thought it was interesting and probably would have helped me when Aidan was diagnosed through newborn screening. However, I emailed the National CFF about the lack of information regarding PGD on their website. They said that was not part of their mission statement. However, this new section seems like the perfect place to mention that two carriers can have a healthy baby using IVF/PGD. We used it after researching for years because nobody in the CF world mentioned it to us. We have a healthy 3 year old and I've been contacted by LOTS of mothers who want that information. The CFF should have something about it. The CFF website is a resource for families who are affected by CF and women want this information. Megan

 

[mneville]

I thought it was interesting and probably would have helped me when Aidan was diagnosed through newborn screening. However, I emailed the National CFF about the lack of information regarding PGD on their website. They said that was not part of their mission statement. However, this new section seems like the perfect place to mention that two carriers can have a healthy baby using IVF/PGD. We used it after researching for years because nobody in the CF world mentioned it to us. We have a healthy 3 year old and I've been contacted by LOTS of mothers who want that information. The CFF should have something about it. The CFF website is a resource for families who are affected by CF and women want this information. Megan

 

[LouLou]

Lisa, I think what you mean is that your children were diagnosed with genetic testing in the presence of symptoms, right? If not, why were they genetically tested? Given that they have two disease causing mutations perhaps the dr made a diagnosis with this alone but generally there have to be symptoms or a positive sweat or a sib with cf.

This is exactly what I'm saying. I'm surprised if you were involved with this that you didn't push them more to address genetic testing as a diagnostic tool.

The pages were riddled with less than perfect language. When speaking of testing it is worded in such a way that it does not empower the patient or the parents. It's written from the medical world perspective. Did Beth or any adult with cf help with this project? It just seems not very thorough...nothing like the info that is covered in the Adult best practices which I read for the first time linking from this page.

 

[LouLou]

Lisa, I think what you mean is that your children were diagnosed with genetic testing in the presence of symptoms, right? If not, why were they genetically tested? Given that they have two disease causing mutations perhaps the dr made a diagnosis with this alone but generally there have to be symptoms or a positive sweat or a sib with cf.

This is exactly what I'm saying. I'm surprised if you were involved with this that you didn't push them more to address genetic testing as a diagnostic tool.

The pages were riddled with less than perfect language. When speaking of testing it is worded in such a way that it does not empower the patient or the parents. It's written from the medical world perspective. Did Beth or any adult with cf help with this project? It just seems not very thorough...nothing like the info that is covered in the Adult best practices which I read for the first time linking from this page.