SILVER SPRING, MD--(Marketwired - August 23, 2016) - The Association of Public Health Laboratories (APHL) has been awarded $4 million to support state newborn screening programs in implementing screening for three genetic disorders: X-linked adrenoleukodystrophy (X-ALD), Mucopolysaccharidosis I (MPS-1) and Pompe disease. This valuable award comes via a two-year cooperative agreement with the Genetic Services Branch of the Maternal and Child Health Bureau of the Health Resources and Services Administration (HRSA) within the U.S. Department of Health and Human Services. These disorders -- all of which have recently been added to the Recommended Uniform Screening Panel -- can cause serious, life-long health effects and sometimes death if not diagnosed and treated early.
Working in partnership with the Colorado School of Public Health , APHL will provide technical assistance, education and financial assistance to aid state implementation of screening for the three disorders. Currently, implementation of screening for Pompe disease, X-ALD and MPS-1 is limited to a small number of states, none of which are at full implementation for all three conditions, according to data collected through APHL's NewSTEPs Data Repository.
"Our goal is to make screening for these diseases accessible nationwide," said Jelili Ojodu, director of the Newborn Screening and Genetics Program at APHL. "This is a strong beginning."
Additionally, this award will allow APHL to provide enhanced technical assistance to newborn screening follow-up programs, an important service as positive Pompe disease, MPS-1 and X-ALD screenings pose new and unique challenges. Positive screening results for these three diseases may not only identify infants who need immediate treatment, but positive results for these three conditions may also identify infants who may experience late- or adult-onset and female infants who are asymptomatic carriers. This will shift the existing paradigm of follow-up result reporting toward a model of longer-term follow-up.
Newborn screening is the practice of screening every newborn baby in the US for certain harmful or potentially fatal conditions that are not otherwise apparent at birth. CDC included this invaluable program on their list of ten great public health achievements in 2011.
The Association of Public Health Laboratories (APHL) works to strengthen laboratory systems serving the public's health in the US and globally. APHL's member laboratories protect the public's health by monitoring and detecting infectious and foodborne diseases, environmental contaminants, terrorist agents, genetic disorders in newborns and other diverse health threats.
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Contact Information:
Contact:
Michelle Forman
240.485.2793
michelle.forman@aphl.org
