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Recent News and Articles on the Keywords: all babies + life-threatening genetic + screened  Related to the article below (Last Update: 5/12/2008)

Newborn screening act passes in Congress
Downey Patriot, CA - May 8, 2008
Today, a simple blood test can detect life-threatening genetic illnesses before any symptoms begin, allowing crucial time for early treatment to prevent ...
Alabama newborns will be screened for cystic fibrosis
al.com, AL - Apr 19, 2008
(AP) ? All newborns in Alabama will be screened for cystic fibrosis, starting Monday, as doctors check for the life-threatening illness that's one of the ...
Source: Google News

Panel urges newborn sickle cell screening -
G Kolata - Science, 1987 - sciencemag.org
... has sickle cell disease and about 1500 black babies are born with it each year.
All 50 states routinely screen newboms for the genetic diseases phenylketonuria ...

Issues in state newborn screening programs -
EW Clayton - Pediatrics, 1992 - Am Acad Pediatrics
... affected babies, and there has been very little research ... into account all the benefits
and costs. For the poten- tially life-threatening disorders discussed by ...

'Drawing the line'in prenatal screening and testing: health practitioners' discussions -
C Williams, P Alderson, B Farsides - Health, Risk & Society, 2002 - ingentaconnect.com
... Whilst there was little disagreement about screening for life-threatening conditions,
many of the ... It?s not convenient for me to have a baby at all at this ...

Screening Newborns for Congenital Disorders -
GL Hoffman, RH Laessig - Wisconsin Medical Journal, 2003 - wisconsinmedicalsociety.org
... of test results is essential because of the life-threatening nature of ... As with all
public health, the benefit is in ... cost, in 2003, is $35.50 per baby or $2.4 ...

Parents'experiences of universal screening for haemoglobin disorders: implications for practice in a … -
L Locock, J Kai - British Journal of General Practice, 2008 - ingentaconnect.com
... scholars teach that termination for life- threatening conditions is ... soul enters the
unborn baby (?ensoulment ... diagnosis vital, although not all Muslim parents ...

[PDF] Newborn screening
ARERINA NEWBORN - biotechnology.gov.au
... rare, genetic or metabolic conditions that may be life threatening and/or ... Screening
does not detect all affected babies ... About 1-2% of babies tested require ...

Current sickle cell screening program for newborns in New York City, 1979-1980 -
R Grover - American Journal of Public Health, 1983 - Am Public Health Assoc
... 8-20 months despite the life-threatening complications among eight ... from the New York
State Genetics Grant, a ... the hospital.4 Since almost all babies born in New ...

Avoiding the Cost Burden of Newborn Screening for the Poor and Uninsured: Mississippi's Model -
DR Bender - Health Care for the Poor and Uninsured: Strategies That Work, 1992 - books.google.com
... the most common hemoglobin disorders, is considered life-threatening. ... to perform
confirmatory testing on all abnormal hemoglobin ... at birth those babies who have ...

[PDF] Pre-Implantation Genetic Diagnosis
S Srivastava - COVER - columbia.edu
... the United States, more than 70,000 babies?or approximately 2% of all
newborns?are ... one of the many life-threatening genetic disorders, which ...

Psychological impact of false-positive results when screening for cystic fibrosis -
A Tluczek, EH Mischler, B Bowers, NM Peterson, ME … - Pediatr Pulmonol Suppl, 1991 - doi.wiley.com
... with a child who experienced a life-threatening event ... the child or the presence of
a genetic illness might ... added to the neonatal program for all babies born in ...

Source: Google Scholar

All Babies Born In Massachusetts Should Be Screened For Life-Threatening Genetic And Functional Disorders
Nearly 90 percent of all babies born in the United States -- more than double the percentage in 2005 -- live in states that require screening for at least 21 serious disorders, according to the latest March of Dimes Newborn Screening Report Card. Massachusetts has failed to make progress on expanding the newborn screening panel this year. At present, 13 states and the District of Columbia require screening for the 29 core, treatable, conditions.

Massachusetts had been a leader in newborn screening when in the early 1960s it became the first state to routinely screen all newborns for PKU (phenylketonuria), an inherited metabolic disorder that, if untreated, causes severe mental retardation. But today Massachusetts requires screening for only 12 of the 29 core conditions.
The March of Dimes endorsed the 2004 report of the American College of Medical Genetics that calls for every baby born in the U.S. to be screened for 29 genetic or functional disorders. If diagnosed early, all of these devastating conditions can be successfully managed or treated to prevent severe consequences.

Two years ago, after the March of Dimes endorsement, only 38 percent of infants were born in states that required screening for at least 21 of these 29 core conditions. As a result of four years of intensive advocacy efforts by March of Dimes chapters and their partners, that percentage has increased to 87.5, or about 3.6 million babies.

Ed Doherty, State Director for the March of Dimes Massachusetts Chapter said, "We are optimistic that when the Massachusetts Department of Public Health's Newborn Screening Advisory Committee meets in October this year that they will recommend to the Commissioner that the State increase the number of newborn screening tests it currently requires."

"While this important expansion of newborn screening is very good news for families, the lives of 500,000 newborns who still aren't tested hang in the balance," said March of Dimes President Dr. Jennifer L. Howse. "Despite the pleas of parents, clinicians and advocacy groups, the United States still lacks consistent federal guidelines for newborn screening. Babies must be screened to receive immediate treatment necessary to survive and lead healthy lives. The lack of federal guidelines makes it difficult for states to get support for needed legislation," she said.

In states that don't follow the ACMG recommendations, March of Dimes staff and volunteers continue to work with governors, legislatures, health departments, and parent groups to advocate for expanded newborn screening on a state-by-state basis.

Nationwide, a discouraging 6.1 percent of babies are born in states that required screening for only 10 to 20 of the core conditions and 6.2 percent of newborns will get screening for fewer than 10 conditions. "Disparities in state newborn screening programs mean some babies may die or develop brain damage or other severe complications because they are not identified in time for effective treatment," said Dr. Howse.
"All babies across America should receive the benefits of being screened for all of these 29 core conditions," said Dr. Howse.

This is the fifth consecutive year the March of Dimes has analyzed state- by-state newborn screening requirements, creating a snapshot of the nation's progress toward improving the health of infants and children. The March of Dimes contracted with the National Newborn Screening and Genetics Resource Center to survey each state's newborn screening requirements.

The snapshot shows that the nation is on target to meet the March of Dimes goal of having all babies screened for 20 or more of the recommended panel of genetic disorders by 2008.

Federal Advocacy Efforts

The March of Dimes supports two pieces of federal legislation, the 'Newborn Screening Saves Lives Act,' sponsored by Sen. Christopher J. Dodd (D-CT), Sen. Orrin Hatch (R-UT), Rep. Lucille Roybal-Allard (D-CA), and Rep. Mike Simpson (R-ID) and 'The Screening For Health of Infants And Newborns (SHINE) Act of 2007,' sponsored by Sen. Hillary Rodham Clinton (D-NY) and Rep. Thomas Reynolds (R-NY).

These bills would lay the groundwork for national guidelines and authorize funding for several new federal initiatives designed to increase educational resources for parents and health care providers, improve follow-up care for infants, provide assistance to states expanding and improving their newborn screening programs and develop new screening tools for additional life- threatening disorders.

"We call on Health and Human Services Secretary Mike Leavitt to help give all babies a fighting chance for a healthy life through expanded newborn screening," said Dr. Howse.

The ACMG recommendation to screen for 29 conditions has been endorsed by clinicians and researchers alike, including the American Academy of Pediatrics (AAP) and the federal Health and Human Services Secretary's Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children. Both the March of Dimes and the AAP have called for a national newborn screening standards as well as federal funding to help states improve their screening programs.

Information for Consumers

A list of which screening tests are provided by each state can be found on the "Peristats" section of the March of Dimes Web site at http://marchofdimes.com/peristats, which is updated regularly, or at the National Newborn Screening and Genetics Resource Center Web site at http://genes-r-us.uthscsa.edu.

"Regardless of how many screening tests are mandated by individual states, parents and health professionals should be fully informed of the benefits and availability of comprehensive newborn screening," Dr. Howse said. "It's also advisable for parents to receive information on screening tests for those conditions for which there is not yet treatment," she stated.

Newborn screening is done by testing a few drops of blood, usually from a newborn's heel, before hospital discharge. A positive result does not always mean the infant has the disorder. If a screening result is positive, the infant is re-tested and then given treatment as soon as possible, before becoming seriously ill from the condition.

Parents can find a brochure about the recommended newborn screening tests online at the March of Dimes Web site at http://marchofdimes.com/nbs.

Those who live in states where newborn screening is limited can arrange privately for additional tests, often at additional expense to the family or health plan. Parents should check with their doctor or their state health department for a list of providers of these screening tests.

The March of Dimes is a national voluntary health agency whose mission is to improve the health of babies by preventing birth defects, premature birth and infant mortality. Founded in 1938, the March of Dimes funds programs of research, community services, education, and advocacy to save babies and in 2003 launched a campaign to reduce the rate of premature birth.

March of Dimes
http://www.marchofdimes.com
 
 
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