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Wisconsin First State in Nation to Screen Newborns for 'Bubble Boy Disease'
Date:1/3/2008

e as a blueprint for newborn screening in other states, spurring testing to save the lives of infants throughout the nation," said Jack Routes, MD, medical director of Allergy and Clinical Immunology at Children's Hospital of Wisconsin.

The Jeffrey Modell Foundation and Children's Hospital are providing the initial funding for this multi-year pilot. The foundation is a non-profit organization established by Vicki and Fred Modell in memory of their son Jeffrey who died at age 15 from a Primary Immunodeficiency (PI). SCID is one of 140 PI diseases. The pilot, which continues through 2010, will evaluate the effectiveness and outcomes of early testing for SCID. Once the pilot reaches completion, investigators hope for a rapid acceptance of the screening nationwide.

"The workshop held just about a year ago generated results far beyond anyone's expectations. The Jeffrey Modell Foundation identified newborn screening of SCID as a primary focus of its efforts and has now created a unique federal, state and private collaboration. We are committed to their vision that all newborns will be screened for SCID in a system where true cases are identified promptly and treated effectively," said Dr. Robert Vogt of the Newborn Screening Branch of the CDC Division of Laboratory Sciences.

U.S. Congress weighs in

In a related development, Congress just passed the first federal legislation funding newborn screening for SCID. Under the program, states will be able to apply for grants from the Centers for Disease Control and Prevention to set up pilot programs specifically for the purpose of screening for SCID.

"These developments are moving faster than Vicki and I could have ever imagined," said Fred Modell, co-founder of the Jeffrey Modell Foundation. "We now have eight to 10 states considering a pilot program to screen for SCID. We have federal funding, and cooperation by the CDC and National Institutes of Health. The state of Wisconsin is leading the
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SOURCE Children's Hospital of Wisconsin
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