LisaGreene
New member
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
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