Congressional Budget Office: Surveillance

"S. 1858 also would authorize CDC...to create a surveillance program for heritable disorders." (April 1, 2008)

S. 1858: Coordinated Surveillance and Monitoring
The Advisory Committee on Heritable Disorders in Newborns and Children [may make] "recommendations, advice or information dealing with...coordination of surveillance activities, including standardized data collection and reporting, harmonization of laboratory definitions for heritable disorders and testing results, and confirmatory testing and verification of positive results, in order to assess and enhance monitoring of newborn diseases."

S. 1858: Regional Research Centers
The Interagency Coordinating Committee on Newborn and Child Screening shall make "recommendations for the establishment of regional centers for the conduct of applied epidemiological research on effective interventions to promote the prevention of poor health outcomes resulting from such disorders..."

S. 1858: Monitoring of Individuals with Disorders
The Interagency Coordinating Committee on Newborn and Child Screening shall make "recommendations for programs to collect, analyze, and make available data on the heritable disorders recommended by the Advisiory Committee on Heritable Disorders in Newborns and Children..., including data on the incidence and prevalence of, as well as poor health outcomes resulting from, such disorders.

S. 1858: Hunter Kelly Research Program.
The Secretary of Health and Human Services may continue "experimental treatments and disease management strategies for additional newborn conditions, and other genetic, metabolic, hormonal and or functional conditions that can be detected through newborn screening..."