NIH launches 'Health Info Rx Program' on newborn screening and related genetic disorders

After a doctor sees a patient, he or she often prescribes medications. But what if such a doctor also wants to direct a patient to up-to-date, reliable, consumer-friendly information about a genetic condition, or an explanation of the basics of genetic science? Under a new program launched today, practitioners are being encouraged to refer their patients to Genetics Home Reference, a free, patient-friendly Web site of the National Institutes of Health (NIH), at http://ghr.nlm.nih.gov.

Under this program, doctors can request free "Information Rx" pads, which will enable them to write "prescriptions," pointing patients to the Genetics Home Reference site and to the wealth of information it contains. Obstetricians can direct their patients to the site's explanation of newborn screening, so expectant mothers will better understand why this testing will be important for their baby.

Pediatricians and family physicians who see new moms and dads often provide good advice on newborn or child care concerns. If there happens to be a problem detected in a screening, where should this doctor direct the concerned parents for reliable, easy-to-read information at a stressful time? NIH's Genetics Home Reference can be an invaluable resource.

All states screen newborns for certain genetic disorders. These conditions are usually not apparent in the newborn, but can cause physical problems, mental retardation and, in some cases, death.

Micki Gartzke, a patient advocate from Shorewood, Wisconsin, lost her 13-month-old daughter, LeA Marie, to a rare genetic disorder, Krabbe disease, in 1987. "As a parent, of course you want every possible piece of information when you find out your child is sick. The Internet back then was in its infancy --resources were scattered and I did a lot of hunting and pecking to find things that would help us. It's so gratifying to see a resource like Genetics Home R

Contact: Robert Mehnert
NIH/National Library of Medicine

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