What is Newborn Screening?

Newborn screening, conducted through a simple blood test, is vital to diagnosing a wide range of medical conditions before serious, sometimes life-threatening symptoms begin. About one out of every 300 newborns has a condition that can be diagnosed through newborn screening. Early diagnosis driven by newborn screening plays a critical role in the lives of babies born with treatable conditions, allowing them to receive proper care and go on to live healthy, thriving lives. 

Can newborn screening diagnose Primary Immunodeficiency?

While newborn screening cannot currently detect every form of Primary Immunodeficiency, it can detect several specific defects including Severe Combined Immunodeficiency (SCID), which is fatal if undetected and untreated.

When SCID is detected through newborn screening, it leads to earlier treatment, infection prevention, and improved outcomes. 

Does every country screen newborns for Primary Immunodeficiency?

Today, 26 countries conduct population screening for SCID, including the United States. But this was not always the case. 

Starting in 2001, Fred and Vicki Modell lobbied for seven years in Washington D.C. to raise public awareness for PI and add SCID to the national newborn screening panel. The Jeffrey Modell Foundation worked directly with the US Secretary of Health to fund the first newborn screening pilot in 2008 and pledged $1 per baby screened starting in 2012. In 2018, newborn screening for SCID was officially implemented in all 50 states, Washington D.C., Puerto Rico, and the Navajo Nation.

The Jeffrey Modell Foundation has continued to advocate for the global implementation of newborn screening for SCID. In addition to the 26 countries currently conducting population screening, seven countries are conducting screening in select areas and eight countries have pilot programs underway. 

Learn more about the progress made towards SCID screening worldwide here.

How can I support newborn screening in my country?

Along with our global community of partners, the Jeffrey Modell Foundation continues to work towards a future where every newborn is screened for SCID. 

See if your country has implemented newborn screening for SCID here.

Don’t see your country listed? You can use the Jeffrey Modell Foundation’s template to write a letter to your representatives.