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News from Medical News Today Feb. 24,
2007
Leaders Meet To Discuss Emergency
Preparedness For Newborn Screening And Genetic Services
Newborn Screening (NBS) saves lives, but what happens in the case of
a natural or manmade disaster? National experts convened last week
to review components of the NBS process and actions needed to
maintain vital NBS and genetic services during and after a disaster
such as a hurricane or terrorist attack.
"We don't always think about the most medically-fragile victims of
disasters--newborns and older patients with metabolic disorders,"
said Michael S. Watson, PhD, ACMG executive director and moderator
of the Emergency Preparedness for Newborn Screening and Genetic
Services National Workgroup Meeting. "This group is developing the
plans and infrastructure to make sure that babies receive the
necessary newborn screening tests and follow up and that those
already on treatments are able to continue life-saving therapeutics
in the case of catastrophes." It is estimated that disorders
detectable through NBS affect approximately 1 in 500 babies born
annually in the U.S. and nearly 10,000 individuals identified by
these programs will require life-long chronic disease management.
The Workgroup meeting was attended by representatives of the medical
genetics and public health communities, Federal and State government,
industry, and consumer advocacy. The workshop focused on delineating
the needs of this unique patient population and addressed:
-- Lessons learned from 9/11 and Hurricane Katrina;
-- Existing Regional Disaster Response Plans and other models;
-- Emergency Communication Plans;
-- Role of lab and medical product manufacturers during a disaster;
-- Roles and needs of patient support and advocacy organizations;
-- Patient needs in rural and remote areas.
"Despite strides in national emergency preparedness to address
relatively common health issues, much remains to be done in ensuring
that critical genetics services, many of which may be both
time-sensitive and life-saving, continue uninterrupted in the case
of a catastrophe," said Dr. Jess Thoene, a clinical geneticist at
the University of Michigan and co-chair of the National Emergency
Preparedness Workgroup. "Any emergency plan that captures the needs
of these fragile patients, most of whom have rare diseases and
depend on products that are not commonly stocked at the local
pharmacy, will have solved the needs of patients with common chronic
illnesses as well."
"The aim of the National Coordinating Center for the Genetics and
Newborn Screening Regional Service Collaborative Groups (funded as a
cooperative agreement with the Health Resources and Services
Administration) is to develop disaster response tools that can be
adapted locally, regionally and nationally to ensure that infants at
any step in the NBS system, ranging from the newborn heel-stick
screen through laboratory testing, diagnosis and long-term
management, are able to complete screening in a timely way and
maintain their access to critical treatments and specialist care
providers," said Watson.
In coming months, Workgroup members will develop materials to
educate patients about necessary steps to be prepared to continue
their care if involved in an emergency, as well as communication
capabilities to reconnect patients with specialists and to ensure
access to medical foods and therapeutics. These will be available at
http://www.acmg.net
and
http://www.nccrcg.org .
About the American College of Medical Genetics
Founded in 1991, the American College of Medical Genetics advances
the practice of medical genetics and provides education, resources
and a voice for 1400 biochemical, clinical, cytogenetic, medical and
molecular geneticists, genetic counselors and other health care
professionals committed to the practice of medical genetics.
About the National Coordinating Center
In 2004, Health Resources and Services Administration (HRSA),
awarded cooperative agreements to establish seven Genetic Service
and Newborn Screening Regional Collaborative Groups (RCs) and a
National Coordinating Center (NCC) as part of on-going efforts to
improve the health of children and their families by promoting
translation of genetic medicine into public health and healthcare
services. The NCC is formed as a partnership with HRSA through a
cooperative agreement with the American College of Medical Genetics
(ACMG).
American College of Medical Genetics
http://www.acmg.net
http://www.medicalnewstoday.com/medicalnews.php?newsid=63773&nfid=rssfeeds
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