"Berlin Declaration" Mandates Newborn Screening Globally

Nov 14, 2013, 09:00 ET from Jeffrey Modell Foundation

NEW YORK, Nov. 14, 2013 /PRNewswire-USNewswire/ -- 212 world renowned experts in Primary Immunodeficiency from 78 countries signed a "Berlin Declaration" calling for global implementation of newborn screening for Severe Combined Immunodeficiency (SCID), at the recently convened Berlin Summit organized by the Jeffrey Modell Foundation.    

The meeting brought together physicians from the Jeffrey Modell Centers Network (JMCN) addressing new discoveries, innovative research, best practices, new treatment protocols, and the exploration of regional challenges and successes in the field.  A major topic of discussion was the addition of SCID to Newborn Screening programs worldwide. 

The test for SCID utilizes the TREC Assay.  It provides the earliest possible identification of this life threatening condition and allows for early intervention of bone marrow transplantation before infants suffer from severe infections, organ damage, and ultimately, death.  While other methods are currently being developed, the TREC Assay has the specificity and the sensitivity to accurately identify affected newborns.

Vicki and Fred Modell, Co-Founders of the Jeffrey Modell Foundation started the Newborn Screening Program in 2008.  In 2010, The U.S. Secretary of Health and Human Services,  Kathleen Sebelius, recognized the Jeffrey Modell Foundation's efforts and recommended that all newborns be screened for SCID, characterizing this type of screening as "The National Standard for Newborn Screening Programs".  It was later added to the National Newborn Screening Core Panel.  A total of 16 states in the United States are participating in this population screening process, and more than 60 percent of all newborns in the United States are now being screened for SCID.   The program has shown that at least 1:33,000 tested positive for SCID.  

The JMCN physicians have recognized the implementation of Newborn Screening for SCID as a global issue and believe this test should be the global standard.  There is a 95 to 100 percent success rate of survivorship for babies transplanted in the first three months of life.  It is essential these tests are conducted at birth because shortly after three months, the survival rate sharply declines, more serious infections develop, and fatality is inevitable.  The physicians characterized SCID screening as a "pediatric emergency".  The Berlin Declaration is a call to action for government health officials to not only recognize the importance of this test, but also to immediately implement it into their Newborn Screening programs. 

About Jeffrey Modell Centers Network
JMCN is a program that includes 556 physicians at 234 academic institutions in 196 cities and 78 countries spanning 6 continents.  This network connects centers and physicians from around the world, fostering meaningful interactions, cooperation, and new partnerships.   This program has generated a 70 percent increase in identified patients worldwide over the past 18 months and inspires a continued encouragement and support of physician education and public awareness relating to all Primary Immunodeficiency disorders.

Vicki and Fred Modell, Co-Founders
Jeffrey Modell Foundation




Image with caption: "Jeffrey Modell Foundation." Image available at: http://photos.prnewswire.com/prnh/20131114/MM16675-a

Image with caption: "Jeffrey Modell Centers Summit." Image available at: http://photos.prnewswire.com/prnh/20131114/MM16675-b

SOURCE Jeffrey Modell Foundation