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National Newborn Screening Follow-Up and Oversight Needs Improvement According to UAlbany Researchers

Contact: Catherine Herman (518) 437-4980

ALBANY, N.Y. (July 17, 2006) -- The current process within states and territories for following up on and monitoring the care of newborns with disorders diagnosed by state newborn screening programs is in need of formalization, standardization and improved quality management, according to Timothy J. Hoff, an associate professor of health policy and management at the University at Albany's School of Public Health.

Along with researcher Adrienne Hoyt, Hoff examines existing policies and practices for long-term follow-up (LTFU) among state newborn screening programs in the article "Practices and Perceptions of Long-term Follow-up Among State Newborn Screening Programs", published in the June 2006 issue of the clinical journal Pediatrics. They found wide variation across states in terms of long-term follow-up practices and policies, with many states having no formal long-term follow-up activities in their newborn screening programs. Through their findings, they conclude that policy decisions creating increased workload for state newborn screening programs, such as adding new disorders for testing or performing extended follow-up for newborns with confirmed disorders, often do not align with a state's existing resource or staffing capacity. Most newborn screening programs remain very small, and one half of the states and territories that were polled do not engage in any long-term follow-up (LTFU) oversight or activities, and those that do allocate few resources to conduct follow-up activities.

"Newborn screening programs are in the midst of the largest expansion of genetic and metabolic testing ever conducted, and the key question is the extent to which these same programs, and the states in which they are housed, have responsibilities to ensure adequate follow-up for those tested and diagnosed with disorders," said Hoff, who is now completing a larger national study of long-term follow-up. "What is at issue is whether the current system works effectively to monitor and regulate the care of at-risk patients or patients with diagnosed disorders as they age. Right now, the nation is without a standard set of practices for long-term follow-up, and many states have minimal or no long-term follow-up capacity, including New York State. Without such oversight and services in place, we cannot know if we are providing the best health care possible to those most precious patients: newborns and children."

Other key findings of the study:

  • Many state newborn screening programs did not have strong quality assurance mechanisms for LTFU in place, including a standardized LTFU protocol to guide oversight and evaluation activities, computerized tracking systems to monitor care provided to newborns over time, formal evaluation plans to gauge the success of their program's LTFU activities, and ongoing cost-benefit analyses of their LTFU activities and investments;
  • Few linkages between the state's decision to engage in LTFU and the state newborn screening program's resource and staffing capacity to perform LTFU activities, with almost one half of all state programs that engaged in LTFU oversight and activities reporting that they did not have any type of standardized policies or procedures in place to guide LTFU but instead relied upon informal, ad hoc activities;
  • Definitions of LTFU in state newborn screening programs that often do not align with the actual day-to-day LTFU activities engaged in; and wide variation across programs in terms of the staffing expertise and leadership overseeing LTFU.

Read the abstract of the article >>

For additional information on the study, contact the Office of Media Relations at (518) 437-4980 or e-mail at

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