National Institutes of Health Launches “Health Information RX Program” on Newborn Screening and Related Genetic Diseases National Institutes of Health Launches “Health Information RX Program” on Newborn Screening and Related Genetic Diseases
National Institutes of Health–National Library of Medicine
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 Reference, which has collected and organized a wealth of helpful materials into a one-stop shopping experience. I know that it is of great relief to parents I work with through Hunter’s Hope, the foundation to help families coping with Krabbe disease, and parents around the country.”
Fortunately, most babies receive a clean bill of health when tested. When test results show that a baby has a health defect, however, early diagnosis and treatment can make the difference between lifelong disabilities and optimal development.
Four of the nation’s most respected medical associations, with a combined membership of over 200,000, have teamed with two NIH institutes on this groundbreaking initiative. The National Library of Medicine (NLM), the world’s largest medical library, and the National Institute of Child Health and Human Development (NICHD), the research arm of NIH dedicated to ensuring that every child in the U.S. is born healthy and grows up free from disease and disability, have entered into partnerships with the American Academy of Pediatrics (AAP), the American Academy of Family Physicians (AAFP), the American College of Obstetricians and Gynecologists (ACOG) and the American College of Medical Genetics (ACMG) to encourage physicians to point patients to first-rate online health information in NLM’s Genetics Home Reference database.
“Part of a physician’s job is to explain illnesses, diagnoses and treatments to their patients,” says Donald A.B. Lindberg, MD, Director of the National Library of Medicine. “NLM’s Genetics Home Reference provides authoritative, user-friendly, and commercial-free information that doctors can use to supplement information provided in the office or clinic. We think it saves time and improves doctors’ communications with patients, in addition to its obvious value in helping keep babies healthy.”
“Physicians have always known that an informed patient who takes an active role is a ‘better’ patient,” notes Duane Alexander, MD, Director of the National Institute of Child Health and Hunan Development. “We believe that both patients and their doctors will welcome this additional tool — good medical information — in their continuing efforts to provide good health care, for newborns and for people of all ages.”
Genetics Home Reference includes over 500 topics on genetic conditions and related genes. The site features a richly illustrated tutorial that explains the basics of genetics, from the cellular level on up, and a glossary of genetics terms. The site is regularly updated by scientific staff and reviewed by external experts.
A similar Information Rx Project, pointing patients to NLM’s MedlinePlus database (medlineplus.gov), was launched in 2003. That program has been well received by doctors and their patients nationwide, helping doctors direct patients to NLM’s MedlinePlus database, with information on over 700 health topics and many other resources.
The National Library of Medicine, the world’s largest medical library, is a component of the National Institutes of Health, an agency of the U.S. Department of Health and Human Services.