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UAlbany Researcher Studies Follow-Up Care of Newborns Screened for Genetic Disorders
$68k Project will look into developing national policy standards for long-term care practices

Contact: Catherine Herman (518) 437-4980

ALBANY, N.Y. (July 13, 2005) -- Timothy J. Hoff, an associate professor of health policy and management at the University at Albany's School of Public Health, has been awarded a $68,000 contract by the University of Texas Health Science Center at San Antonio through the National Newborn Screening and Genetics Resource Center and the Health Resources and Services Administration to study long-term follow up care of newborns who receive abnormal screens for certain disorders. The project is designed to increase understanding of activities engaged in by state screening programs as it relates to long-term follow up care.

"As newborn screening programs expand nationally in terms of the number of disorders screened for, there is an increasing need to assure timely, appropriate, and ongoing care for newborns diagnosed with a genetic or metabolic disorder," said Hoff. "State screening programs may serve as key points of oversight for assuring proper integration of the newborn into a system of care for their disorder."

Interviews and focus groups will be held with leaders of state screening programs. In addition, the study will gain knowledge about the availability of genetic services in each state. Findings will help inform the question of whether or not national policies or guidelines might be helpful in standardizing long-term follow-up across state newborn screening programs.

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 State. 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 healthcare for individuals and families; environmental hazards; substance abuse and social violence; maternal mortality in developing countries; the promises and threats of genetic engineering; protecting food and water supplies, research on genetics and genomics and their application to health care, and conducting health outcomes and patient safety research.


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