Background: Newborn screening (NBS), which is used to identify at birth underlying conditions that can cause or contribute to disease, disabilities, and death, has been an essential preventive public health program in the United States since the 1960s. Each year approximately 4 million newborns are screened for an increasing number of inherited metabolic, hematologic, and endocrine disorders. Much of the data collected by individual NBS programs has been used to evaluate the screening and short-term follow up components that essentially take the infant from the heelstick to the referral for clinical care after definitive diagnosis. Public health agencies need to evaluate additional outcome measures to ensure that the potential benefits of early identification are realized for individual infants and to confirm that the public has attained the broad goals of reducing morbidity, mortality, and disability. New funding of Early Hearing Detection and Intervention (EHDI) programs, often conducted by the same state agencies involved with NBS, has provided an opportunity to strengthen comprehensive newborn screening follow-up for a wide range of conditions.

Funding and Objective: CDC’s Division of Birth Defects, Child Development, and Disability and Health has awarded Cooperative Agreement funds to the State of Colorado to assist it in developing and enhancing its EHDI tracking and surveillance program and to integrate the EHDI program into other newborn screening programs. CDC will work with officials in the Colorado Department of Public Health and Environment to develop ways of integrating EHDI with the NBS program and to do prospective follow-up of cohorts of newborns with hearing impairment, hemoglobinopathies, phenylketonuria, and other disorders identified through newborn screening. Funding, which is planned for a period of five years, began in October 2000. Planning is currently under way to develop a model population-based follow-up system using state-of-the-art methods in epidemiology and information science. One specific objective is to document services received and medical outcomes for each affected child at least annually.