Challenge
Recognized as the largest and most successful health promotion and disease prevention system in the country, newborn screening is the practice of testing newborn babies for certain harmful or potentially fatal conditions that can affect a newborn’s physical and mental development before symptoms begin. While these conditions are usually rare, early detection is crucial since intervention can prevent death or a lifetime of severe disabilities.
The driving force behind the success of the newborn screening system is Title XXVI of the Children's Health Act of 2000, Screening for Heritable Disorders, which was reauthorized and expanded in 2008 by the Newborn Screening Saves Lives Act of 2008 (collectively, the Act). This Act establishes grant programs to improve the ability of states to provide newborn and child screening for heritable disorders and for evaluating the effectiveness of screening, counseling, or health care services in reducing the morbidity and mortality caused by heritable disorders in newborns and children.
The U.S. Department of Health and Human Services’ (HHS) Secretary Advisory Committee on Heritable Disorders in Newborns and Children (Advisory Committee) provides the Secretary with recommendations concerning projects and information to develop policies and priorities that build the capacity of state and local health agencies to provide for newborn and child screening, and for counseling and health care services for newborns and children having or at risk for heritable disorders.
Solution
Atlas Research and partners from the Duke Clinical Research Institute assisted the Advisory Committee by developing public health policy impact analyses, supporting the Advisory Committee’s Condition Review Team, and developing background and technical materials. The materials aided the Advisory Committee in providing the Secretary with recommendations.
Results
Atlas provided analyses, materials, and support to the Advisory Committee who makes recommendations to the Secretary to ensure development of policies, guidelines, and programs that support laboratory scientists and other public health and medical practitioners in appropriately applying universal newborn screening tests and utilizing the latest technology.