State Health Commissioner Announces $1.2 Million Federal Grant to Improve Newborn Screening for Genetic Disorders

Funding Focuses on Improving Electronic Health Information Exchange Between Health Care Providers and Public Health Agencies

ALBANY, N.Y. (Dec. 8, 2009) – State Health Commissioner Richard F. Daines, M.D., announced today that the Department of Health will use a three-year federal grant to improve communication between health care providers and DOH on newborn screening information.

"We will invest the grant in health information technology exchange to improve the newborn screening system," Commissioner Daines said. "Electronic recordkeeping will reduce errors and provide more immediate, complete information about newborn screening and needed interventions to clinicians, public health officials and, ultimately, the baby's family."

The $1.2 million grant will be managed by Dr. Marilyn Kacica, Medical Director for the Department's Division of Family Health; and Dr. Michele Caggana, Deputy Director of the Division of Genetics at the Department's Wadsworth Center. The funding comes from the U.S. Department of Health and Human Services' Health Resources and Services Administration.

New York State screens approximately 250,000 babies for 45 diseases and conditions, including all 29 core conditions recommended by the American College of Medical Genetics and the March of Dimes. Approximately 4,000 babies are referred for additional diagnostic testing, with almost 15 percent of this group expected to be confirmed with a positive diagnosis for any of the 45 screened disorders. New York State also performs hearing screening on all babies shortly after birth.

Although the screening is for rare disorders, some may be life-threatening if left untreated and others may slow down a baby's physical development or cause mental retardation or other problems. Serious disease effects can be lessened and often completely prevented if a special diet or other medication is started early.

"Good communication between health care providers and the State Department of Health is critical to make sure that babies are screened, diagnosed, and treated appropriately," Commissioner Daines said.