The Blog

Newborn Screening: How It Relates to Primary Immunodeficiency

Modified from Artemio Jongco, MD, PhD, MPH Northwell Health This article originally appeared in the IDF ADVOCATE Fall 2016. What is newborn screening? All babies born in the U.S. undergo newborn screening (NBS) in the first days of life. NBS consists of a panel of laboratory tests for a variety of genetic or metabolic disorders,

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North Dakota Becomes 40th State to Screen for Severe Combined Immunodeficiency

A Baby’s First Test – The Answers Might Save a Life The North Dakota Department of Health (NDDoH) announced that July 1, 2016 marked an important step in saving the lives of babies born in North Dakota. The state newborn screening program expanded their newborn screening panel to include Severe Combined Immune Deficiency (SCID), also

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IDF Salt Lake City SCID Program for Young Adults & Older Teens

In conjunction with its 2016 Immune Deficiency Foundation (IDF) Retreats, IDF is offering opportunities for young adults and older teens with SCID to meet and spend time together, connecting with others who have experienced this disease. IDF Retreats offer opportunities for individuals and their family members to learn more about dealing with primary immunodeficiencies. The

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SCID Newborn Screening Campaign: Working to Ensure All Babies in U.S. Are Screened

As of June 1, 2016, Georgia has become the 39th state to begin screening for Severe Combined Immune Deficiency (SCID), also known as the bubble boy disease. Adding Georgia covers 87% of all births in the U.S., but there are still states that have yet to begin screening for SCID. Each state varies in regards

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Maryland Becomes the 37th Screening State!

  Beginning April 1, 2016, Maryland became the 37th state to begin screening for Severe Combined Immune Deficiency (SCID)!  IDF applauds the State of Maryland for recognizing the importance of this initiative and including a dedicated line item in this year’s budget to start screening for SCID.  In addition to being home to IDF, the

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Do You Want to Share Your SCID Story?

    We want to hear from you! Each month IDF would like to feature stories from those affected by Severe Combined Immune Deficiency (SCID). We welcome ideas and submissions—from issues and concerns to personal stories. We want to hear from the SCID community regarding topics you find important and interesting. If you would like

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Idaho, Tennessee and Puerto Rico Now Screen for for SCID

Congratulations to Idaho and Tennessee for initiating newborn screening for Severe Combined Immune Deficiency (SCID) as of March 1, 2016! This means 36 states and 80.6% of births in the U.S. are currently screening for SCID. Great work continues in Puerto Rico where their pilot test program is complete, and they are now fully screening

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IDF SCID Newborn Screening Campaign: 2016 Update

The Immune Deficiency Foundation (IDF) proudly reports that seven states began screening for SCID in 2015: Oklahoma, Virginia, South Carolina, Arkansas, Hawaii, New Hampshire, and South Dakota. The year closed with a total of 34 states screening for SCID, comprising 75% of all births in the U.S. Seven additional states are expected to begin screening

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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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About IDF SCID Newborn Screening
Severe Combined Immune Deficiency (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 Leadiant Biosciences and PerkinElmer.

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