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President George W. Bush signed the Newborn Screening Saves Lives Act of 2007 (Pub.L.110-204) (NBSSLA) into law on April 24, 2008, a day before DNA Day.The Act amended the Public Health Service Act to establish grant programs concerning newborn screening education and outreach, as parents are often unaware that newborn screening takes place and the number and types of screening varies across ...
Expands the duties of the clearinghouse to include: (1) maintaining current data on the number of conditions for which screening is conducted in each state; and (2) establishing or disseminating guidelines for services and personnel necessary for follow-up, diagnosis, counseling, and treatment of to conditions detected by newborn screening. [7]
The lists of diseases for which newborns are tested vary by state. Parents of kids with Krabbe disease, which requires early intervention, are pushing to change state and federal policies.
Newborn screening programs initially used screening criteria based largely on criteria established by JMG Wilson and F. Jungner in 1968. [6] Although not specifically about newborn population screening programs, their publication, Principles and practice of screening for disease proposed ten criteria that screening programs should meet before being used as a public health measure.
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Caring for a newborn also includes health screening of the newborn. Most of the time this occurs in the hospital or pediatrician's office shortly after birth. Every state screens babies for more than two dozen disorders. Early detection of a disorder can prevent future complications. [2]
The following disorders are additional conditions that may be detected by screening. Many are listed as "secondary targets" by the 2005 ACMG report. [1] Some states are now screening for more than 50 congenital conditions. Many of these are rare and unfamiliar to pediatricians and other primary health care professionals. [1] Blood cell disorders
The CDC Good laboratory practice guidelines for newborn screening recommends that "laboratory specimen retention procedures should be consistent with patient decisions." [49] Researchers have described the NBS samples as a gold mine representing a patient population that would otherwise be impossible to get. [46]