Tag: General information

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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National News: Study Findings Support IDF SCID Newborn Screening Campaign

Today, The New England Journal of Medicine. published results of stem cell transplants in infants with Severe Combined Immune Deficiency (SCID), noting the excellent survival among those diagnosed and treated early. This article resulted in national media coverage in The Wall Street Journal, CBS News, USA Today and several other sources that highlight the efficacy

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Newborn Screening Saves Lives Reauthorization Act Passes in the House

The Newborn Screening Saves Lives Reauthorization Act (H.R. 1281) has passed the House, and it is anticipated will be considered by the Senate for final passage in the very near future!  This Act will reengage important assistance programs that provide funding for improvements and expansion of current newborn screening programs. HR 1281 was introduced in

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Experimental Technology Diagnoses Illness in Boy with ADA SCID

Fourteen-year-old Joshua Osborn, a member of the IDF community who was born with ADA SCID, was in a coma after weeks of fluid collecting on his brain for reasons unable to be identified. After physicians attempted all known methods for diagnostic results without success, an experimental new technology was employed with momentous results. Using a

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Webcast Discusses Health Economics Analysis of SCID Newborn Screening in France

PerkinElmer features a webcast with Dr. Isabelle Durand-Zaleski of the Paris Health Economics and Health Services Research Unit discussing the cost effectiveness of implementing systematic screening for Severe Combined Immune Deficiency (SCID). It explains the costs of screening all newborns and the cost potentially avoided by an early treatment (e.g. bone marrow transplant). Click here

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Online SCID Presentation Features IDF Medical Advisory Committee Chair

Rebecca Buckley, MD, Chair of the IDF Medical Advisory Committee and the J. Buren Sidbury Professor of Pediatrics and Professor of Immunology at Duke University, will present a videocast hosted by the National Institutes of Health (NIH) titled, “Severe Combined Immunodeficiency: Lessons Learned and Hope and Concerns for the Future.” This is a component of

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PerkinElmer Presents Webinar on Cost Effectiveness of SCID Newborn Screening

On April 17, 2014, PerkinElmer will be presenting a free webcast with Dr. Isabelle Durand-Zaleski of the Paris Health Economics and Health Services Research Unit to discuss the cost effectiveness of implementing newborn screening for Severe Combined Immune Deficiency (SCID). The presentation will look at the costs of screening all newborns and at the cost

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SCID Newborn Screening in California – A Family’s Story

Annalou was the first baby to be diagnosed with SCID as a result of newborn screening in California. She is now a healthy two-and-a-half-year-old little girl bringing joy to her family, thanks to early diagnosis and treatment. Watch Annalou’s family tell their story on the IDF Advocacy Channel.

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CDC Funds Georgia, Oklahoma, and Virginia to Screen for SCID

The Centers for Disease Control and Prevention’s (CDC) National Center for Environmental Health, Newborn Screening and Molecular Biology Branch recently announced that three states–Georgia, Oklahoma, and Virginia—will be funded for a total of $1,800,000 under the “Program to Support New Implementation of State or Territorial Public Health Laboratory Capacity for Newborn Bloodspot Screening of Severe

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Celebrate with Us! – Newborn Screening 50th Anniversary and Newborn Screening Awareness Month

Newborn screening began in the United States in 1963 when Massachusetts began a program that screened for phenylketonuria (PKU). Now, 50 years later, there are newborn screening tests for over 30 treatable conditions, and newborn screening leads to treatment and early intervention for thousands of babies every year. Newborn screening is so important that it

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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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