Newborn Screening News and Research

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SCD patients who experience discrimination are less likely to follow physician recommendations

Sickle Cell Disease (SCD) is the most common genetic condition detected by newborn screening in the United States - a physically devastating and painful illness affecting an estimated 100,000 individuals currently nationwide.

10 Sep 2014

Newborn screening for SCID holds promise that affected children can lead healthy lives

Using population-based screening outcomes of approximately 3 million infants, a team of scientists across 14 states, including four researchers at the University of Massachusetts Medical School, have shown that newborn screening for severe combined immunodeficiency (SCID) can be successfully implemented across public health newborn screening programs.

21 Aug 2014

Study underscores the importance of newborn screening for Bubble Boy disease

The Immune Deficiency Foundation (IDF) applauds a new study published August 19, 2014 in the Journal of the American Medical Association that underscores the importance of newborn screening for Severe Combined Immune Deficiency (SCID), also known as Bubble Boy disease.

20 Aug 2014

Study examines national impact of newborn screening test for SCID

Severe combined immunodeficiency (SCID), a potentially life-threatening, but treatable, disorder affecting infants, is twice as common as previously believed, according to a new study that is the first to examine the national impact of this newborn screening test.

20 Aug 2014

Newborn screening indicates that incidence of SCID is higher than previously believed

Newborn screening performed in numerous states indicates that the incidence of the potentially life-threatening disorder, severe combined immunodeficiency, is higher than previously believed, at 1 in 58,000 births, although there is a high rate of survival, according to a study in the August 20 issue of JAMA.

20 Aug 2014

States of Maine and Rhode Island add SCID to newborn screening panels

The Immune Deficiency Foundation commends the states of Maine and Rhode Island for adding Severe Combined Immune Deficiency to their states' newborn screening panels, effective August 1, 2014. These states join 21 other states currently screening newborns for SCID, ensuring over two thirds of all babies in the U.S. are now being screened.

5 Aug 2014

State highlights: Calif. contemplates drug testing for doctors; Federal trial testing Texas abortion law begins today

At a time when random drug testing is part of the job for pilots, train operators, police officers and firefighters -; to name a few -; one high-profile line of work has managed to remain exempt: doctors.

5 Aug 2014

Blood-forming stem cell transplantation benefits infants with severe combined immunodeficiency

Babies who are born with severe combined immunodeficiency (SCID) can be successfully treated with a transplant of blood-forming stem cells, according to experts led by Memorial Sloan Kettering's Richard J. O'Reilly, MD, a world-renowned pioneer in the development of transplant protocols.

31 Jul 2014

House approves trauma care programs, newborn screening changes

The House on Tuesday passed legislation by voice vote to reauthorize trauma care programs. Traumatic injury is the top cause of death for people under age 45, according to the Centers for Disease Control. One of the bills, H.R. 4080, would reauthorize Trauma Care System Planning Grants to boost access to trauma care through fiscal 2019 (Marcos, 6/24).

25 Jun 2014

Researcher explores public perceptions related to newborn screening programs

While 94 per cent of Canadians surveyed said they would participate in public health programs that screen newborns for a specific number of genetic conditions, only 80 per cent said they would be willing to participate in screening that would sequence their newborns' genomes.

22 Apr 2014

AB Sciex launches immunosuppressants kit to improve health care

Every organ transplant patient in the world faces the potential danger of his/her body rejecting a new organ, such as a heart, kidney or liver. Immunosuppressant drugs are required to help prevent rejection.

2 Apr 2014

Whole-genome sequencing in newborns could help detect, manage wide array of disorders

Should whole-genome sequencing be used in the public-health programs that screen newborns for rare conditions?

29 Mar 2014

Two pediatricians win March of Dimes/Col. Harland D. Sanders Lifetime Achievement Award in Genetics

Two pediatricians whose research led to the need for early identification of and treatment of severe combined immunodeficiency (SCID) and its inclusion in newborn screening have received the March of Dimes/Col. Harland D. Sanders Lifetime Achievement Award in Genetics.

29 Mar 2014

State highlights: Electronic health record adoption lags; Maine's health problems; Minn. insurance costs

A selection of health policy stories from Maine, Minnesota, Maryland, Missouri, Massachusetts, Georgia and Florida.

19 Mar 2014

State highlights: States urge some retailers to end tobacco sales; abortion in N.D., Ark.; Conn. assisted suicide

A selection of health policy stories from North Dakota, Arkansas, Connecticut, New York, California, Missouri, Arizona and Minnesota.

18 Mar 2014

Viewpoints: Democrats turn tail; amending ACA is tough; Belgium takes hard stance on dying kids

Democrats in competitive races seem to have gotten hall passes to try to dissociate themselves from ObamaCare heading into the midterm elections, but the White House must be ruing some of the liberties their party comrades are taking with this new political independence. Witness the parade of Democrats pleading for more money for that great liberal anathema, Medicare Advantage (2/19).

21 Feb 2014

Hazards of dietary supplements, new birth control device explored

Dietary supplements account for nearly 20 percent of drug-related liver injuries reported by hospitals, according to The New York Times, while a surge in adverse event reports about Essure, a device hailed as next generation birth control, is explored by the Chicago Tribune. NPR looks at the increase in newborn screening tests.

23 Dec 2013

First Edition: December 23, 2013

The early morning highlights from the major news organizations examine today's deadline for enrolling for health insurance that would begin Jan. 1, as well as a variety of other health law stories and several articles on mental health issues:

23 Dec 2013

State highlights: States scramble to change newborn screening programs; obesity rate flat; New York hospital charges vary considerably

States across the country are making significant changes to their newborn screening programs after a Milwaukee Journal Sentinel investigation found that thousands of hospitals were sending babies' blood samples late to state labs that test for rare yet deadly genetic disorders. From keeping labs open on weekends to identifying problem hospitals and providing them with regular performance reports, dozens of health officials are reviewing and retooling their state-run programs (Gabler, 12/11).

13 Dec 2013

Many primary care pediatricians feel uncomfortable in providing care to patients with genetic disorders

Many primary care pediatricians say they feel uncomfortable providing health care to patients with genetic disorders. Also, many do not consistently discuss all risks and benefits of genetic tests with patients, according to research published today in the American Journal of Medical Genetics.

20 Nov 2013

Newborn Screening News and Research

SCD patients who experience discrimination are less likely to follow physician recommendations

Newborn screening for SCID holds promise that affected children can lead healthy lives

Study underscores the importance of newborn screening for Bubble Boy disease

Study examines national impact of newborn screening test for SCID

Newborn screening indicates that incidence of SCID is higher than previously believed

States of Maine and Rhode Island add SCID to newborn screening panels

State highlights: Calif. contemplates drug testing for doctors; Federal trial testing Texas abortion law begins today

Blood-forming stem cell transplantation benefits infants with severe combined immunodeficiency

House approves trauma care programs, newborn screening changes

Researcher explores public perceptions related to newborn screening programs

AB Sciex launches immunosuppressants kit to improve health care

Whole-genome sequencing in newborns could help detect, manage wide array of disorders

Two pediatricians win March of Dimes/Col. Harland D. Sanders Lifetime Achievement Award in Genetics

State highlights: Electronic health record adoption lags; Maine's health problems; Minn. insurance costs

State highlights: States urge some retailers to end tobacco sales; abortion in N.D., Ark.; Conn. assisted suicide

Viewpoints: Democrats turn tail; amending ACA is tough; Belgium takes hard stance on dying kids

Hazards of dietary supplements, new birth control device explored

First Edition: December 23, 2013

State highlights: States scramble to change newborn screening programs; obesity rate flat; New York hospital charges vary considerably

Many primary care pediatricians feel uncomfortable in providing care to patients with genetic disorders

Expanding research and clinical options for children with cancer

Examining how pain could play a direct protective role in the gut

From Puberty to Menopause: Clue’s CEO, Audrey Tsang on the Power of Femtech

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