|National Institutes of Health Launches “Health
Information Rx Program” on Newborn Screening and Related Genetic
Physicians Can Direct Patients to Consumer-Friendly
Online Information with the NIH Seal of Approval
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
“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
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.
The National Institutes of Health (NIH) — The Nation's
Medical Research Agency — includes 27 Institutes and
Centers and is a component of the U.S. Department of Health and
Human Services. It is the primary federal agency for conducting
and supporting basic, clinical and translational medical research,
and it investigates the causes, treatments, and cures for both
common and rare diseases. For more information about NIH and
its programs, visit www.nih.gov.