University at Albany, State University of New York
  Admissions   Academics   Research   IT Services   Libraries   Athletics  
News Home Page
News Releases
Faculty Experts
Campus Update
Campus Stock Photos
Media Relations Office

News Website



UAlbany Study Finds Long-Term Follow-Up Care Lacking in State Newborn Screening Programs
More than half of state programs surveyed report collecting no long-term follow up data of any kind, according to article published in Archives of Pediatric and Adolescent Medicine

Contact(s):  Catherine Herman (518) 956-8150

ALBANY, N.Y. (October 16, 2007) -- State newborn screening programs need to improve their capacity to act in the appropriate public health role for newborn screening follow-up, according to a new article by University at Albany associate professor Timothy Hoff in the October 2007 issue of Archives of Pediatric and Adolescent Medicine. Hoff's research examines the data-related readiness of screening programs to conduct long-term follow-up for newborns that state testing programs first screen for the presence of genetic or metabolic disorders.  Long-term follow-up involves ensuring that newborns diagnosed with disorders such as cystic fibrosis and hypothyroidism receive appropriate care from the health delivery system throughout their adolescent development. 

The results question the appropriateness of placing primary responsibility for long-term follow-up with state newborn screening programs.  Over half of the state programs surveyed reported collecting no long-term follow-up data of any kind, meaning that they cannot track diagnosed children in-house to assess whether or not they receive adequate health services for their disorders over time.  For programs that reported collecting long-term follow-up data on diagnosed individuals, almost half collected data only once per year, and most collected data through a paper form or verbal communication.  Most programs also stored long-term follow-up data in paper files, as opposed to maintaining an electronic database of information. 

"A high degree of variation was seen across state programs in terms of the types of data they collected, even for the same disorder, and how these data were used," said Hoff, who is on the faculty of the Health Policy and Management at UAlbany's School of Public Health. "Smaller states, states devoting more staff to follow-up activities, and states that outsourced their long-term follow-up responsibilities were more likely to report using collected data in ways consistent with core public health functions of surveillance and quality assurance."

Hoff's research included a national sample of 34 state newborn screening programs that completed a survey on their data collection and use practices.  The survey was conducted in winter 2006.  View the complete article.

Through its partnership with the New York State Dept. of Health, UAlbany's School of Public Health offers students immediate access to internships at the Health Department, Albany Medical College, and variety of other public and private health institutions throughout New York. Students have unique access to study the most profound health issues facing us today: the threat of bioterrorism, the spread of HIV/AIDS and other emerging diseases, the lack of affordable and accessible health care for individuals and families, environmental hazards, substance abuse and social violence, maternal mortality in developing countries, the promises and threats of genetic engineering, and protecting food and water supplies.

The University at Albany's broad mission of excellence in undergraduate and graduate education, research and public service engages 17,000 diverse students in nine schools and colleges, and an honors college. For more information about this internationally ranked institution, visit theUniversity at Albany. Visit UAlbany's extensive roster of faculty experts.

Please send questions or comments about the UAlbany News site to: