The Blog

North Carolina to Test Newborns for SCID

The Immune Deficiency Foundation (IDF) commends North Carolina’s Governor Pat McCrory for signing into law, H.B. 698, the Baby Carlie Nugent Bill. This bill, named after Carlie Nugent, who was diagnosed with Severe Combined Immune Deficiency (SCID) at five months old and died at six months old, adds SCID to the state newborn screening (NBS)

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New Online Learning Resource for SCID Screening: Just in Time for Newborn Screening Month

Today, newborns in most states, the District of Columbia and Puerto Rico are screened for at least 29 conditions within the first few days after birth. Using a few drops of blood, newborn screening detects a treatable condition in about 1 in 300 babies born each year. The Newborn Screening Education project,, a joint venture between

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Rally for SCID Newborn Screening in Louisiana

On the morning of Thursday, June 25, before the IDF 2015 National Conference officially began, energized members of the primary immunodeficiency (PI) community joined forces for a Rally for Newborn Screening for Severe Combined Immune Deficiency (SCID) in Louisiana, raising their voices to ensure that Louisiana babies are not unnecessarily at risk of dying from

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FDA Allows Marketing of the First Newborn Screening Test to Help Detect Severe Combined Immune Deficiency.

FDA Allows Marketing of the First Newborn Screening Test to Help Detect Severe Combined Immune Deficiency. The FDA is giving newborn children around the world a wonderful holiday present by allowing the marketing of the EnLite Neonatal TREC Kit, the first screening test that has been allowed to be marketed by FDA for Severe Combined

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Major Win for Newborn Screening!

December 10, 2014, the U.S. Congress passed the Newborn Screening Saves Lives Reauthorization Act (H.R. 1281). The bill now will now make its way to President Obama’s desk for his signature. Once signed into law, the Newborn Screening Saves Lives Reauthorization Act will renew federal initiatives that provide important assistance to state newborn screening programs,

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Nebraska Makes Newborn Health a Top Priority

The state of Nebraska has established its commitment to children by adding mandatory newborn screening for SCID! The Nebraska Department of Health stated, “The test which has been implemented in about 20 other states has proven to be highly sensitive and specific. The program also has a recommended protocol for when positive screen results are

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Action Needed in States Not Screening for SCID

Recent opinion pieces published in Montana and North Carolina expressed hope that both states protect their vulnerable citizens and add SCID newborn screening to their state newborn screening panels. Marcia Boyle, IDF President & Founder, authored an opinion piece for the Missoulian emphasizing the true cost of failing to screen for this potentially-fatal condition. Dr.

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Michigan Newborn Screening Finds Premature Baby with SCID

Samantha was born 9 weeks premature weighing only 3 pounds, 8 ounces. When newborn screening was done in her home state of Michigan, Samantha showed an abnormal result on the test for Severe Combined Immune Deficiency (SCID). This was not of itself conclusive, as premature babies can have abnormal results for the SCID test when

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New Study Confirms the Urgent Need for SCID Newborn Screening

Journal of American Medical Association (JAMA) published a study this week that supports IDF’s campaign to see universal newborn screening for SCID across the U.S. The retrospective study of more than 3 million infants from 11 newborn screening programs found that 92% of infants with SCID who received early intervention, such as bone marrow transplants,

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Maine, Rhode Island, and Oregon Join the Ranks of States Implementing Newborn Screening for SCID

August has been a major month for newborn screening for SCID with Maine, Rhode Island and Oregon joining the 21 other states now screening. Early this month, the states of Maine and Rhode Island officially added mandatory newborn screening for SCID.  “Screening all of our newborns for SCID will help make sure we detect this

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About IDF SCID Newborn Screening
Severe Combined Immunodeficiency (SCID) is a primary immunodeficiency disease. Babies with SCID appear healthy at birth, but without early treatment, most often by bone marrow transplant from a healthy donor, these infants cannot survive. It is imperative therefore that newborn screening programs are established in all 50 states.

This blog is sponsored in part by PerkinElmer and Sigma-Tau Pharmaceuticals, Inc.



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