Our vision: ISNS is recognized worldwide for its contributions to the detection of neonatal conditions and the prevention of their adverse outcomes through excellence in neonatal screening.
Our mission: To enhance the quality of testing and medical services through dissemination of information, guidelines and best practices that benefit all family members and their babies by helping to ensure protection of babies from life-quality threatening conditions.
Welcome to the website of the International Society for Neonatal Screening (ISNS).
This society is aiming to advance screening for neonatal and infant sicknesses and disorders, worldwide.
ISNS has around 350 members in more than 70 different countries. Most members have a professional (para)medical background but a few are involved in parents' or patients' organisations.
For more information about ISNS visit the ISNS-Info section.
ISNS welcomes new members who have demonstrated an active interest in neonatal screening.
Why should I join as a member?
As a member you are entitled to see the privileged pages containing specific news items, a monthly neonatal screening literature service and a discount to ISNS-related conferences. Under certain conditions you may apply for travel grants to such conferences. Having access to the on line membership directory you have easier access to other members sharing specific interests.
How do I become a member?
Minnesota Chapter of the American Academy of Pediatrics Urging Legislators to Pass Newborn Screening Bill
The chapter, which represents nearly 1,000 pediatricians in the state, says the bill is critical to health-related testing that saves children's lives.
2/27/14 (St. Paul, MN) – Legislation aimed at strengthening Minnesota's newborn screening program, which affects nearly all babies born in the state, was introduced today by Rep. Kim Norton (Rochester) and Sen. John Marty (Roseville) with the full support of the Minnesota Chapter of the American Academy of Pediatrics and other organizations.
The bill is intended to reverse legislative changes made to the program in 2012 that limit how long the Minnesota Department of Health (MDH) is allowed to store newborn screening data. Co-authors include Rep. Erin Murphy (St. Paul), Rep. Tom Huntley (Duluth), Rep. Tina Liebling (Rochester), Sen. Tony Lourey (Kerrick) and Sen. Jeff Hayden (Minneapolis).
Under the current law, a child's newborn screening data is automatically destroyed at age 2, rendering it unavailable for future analysis or testing. Additionally, most newborn screening blood spots are destroyed before a child is 71 days old, though it can take up to six months to confirm a diagnosis in some cases.Minnesota has become one of just a handful of states that destroys newborn screening data soon after birth. Many pediatric experts believe the current law is putting babies and families at risk.
"Saving newborn screening data and test results are critical to saving lives," said Robert M. Jacobson, MD, FAAP, president of MNAAP. "Long-term storage of this data assures proper diagnosis and timely follow-up for critically ill children. It also provides the basis for quality control and the development of new tests that can save even more lives."
In 2013, 99 percent of Minnesota newborns were screened for more than 50 rare, yet treatable disorders. Newborn screening has saved more than 5,000 children from death, chronic illness and physical disabilities since 1965.
"We cannot allow one more child to suffer or die due to a needlessly burdensome system that makes it more difficult to identify rare, hidden disorders," Jacobson said. "This bill impacts nearly every baby born in the state as well as their families who may not be aware that their child's data has been destroyed until it is too late. Now is the time to restore Minnesota's newborn screening program, position it as a national leader again, and save as many lives as possible."
The newborn screening legislation is supported by the pediatric leaders at Children's Hospitals and Clinics of Minnesota, the University of Minnesota Amplatz Children's Hospital, Hennepin County Medical Center, Gillette Specialty Health Care and Mayo Clinic Children's Center. Additional partners in the effort to restore Minnesota's newborn screening program include the Minnesota Chapters of the March of Dimes and American Heart Association.
Representing nearly 1,000 pediatricians and pediatric providers, MNAAP is committed to improving the health of all infants, children and teens in Minnesota. For more information, visit http://www.mnaap.org/newbornscreening.htm
Friday, February 28, 2014
A proposal to screen all newborn babies for congenital metabolic diseases has been made by a patients' group.
The Hong Kong Alliance of Patients' Organizations suggested the idea after the Chinese University of Hong Kong released test results of screening for more than 2,500 such babies since last July.
The screening found two babies with slightly abnormal metabolism, but not with congenital metabolic diseases.
Honorary clinical assistant professor of the department of pediatrics Joannie Hui said it was expected that two babies would be found with a rare disease named Inborn Errors of Metabolism - a large class of genetic diseases involving disorders of metabolism - in every 4,000 to 5,000 babies they tested.
The alliance is urging the authorities to use the metabolism screening program on all newborns instead of just testing their cord blood for Glucose-6- Phosphate Dehydrogenase deficiency and Congenital Hypothyroidism.
The metabolism screening can also cover both glucose deficiency and hypothyroidism, it added.
Hui said: "Doctors are likely to overlook this. But when the disease emerges, it could get very serious and in a short time might be too late to treat. Sudden death may result in extreme cases."
She said it was vital to diagnose, through screening, at the earliest stage so the affected babies can be treated.
The university screening tested 30 kinds of metabolic diseases, including amino acid disorders, fatty acid oxidation disorders and organic acid disorders through a few drops of blood collected by pricking the baby's heel.
The parents paid HK$800 for the test, which was done within one day of starting oral feeding to seven days after birth at several public and private hospitals, including Prince of Wales and Princess Margaret hospitals.
With today being Rare Disease Day, the organization also called for a policy to support patients with rare diseases and their carers.
The organization's vice chairman, Lam Chi-yau, said pressure on patients and carers was very high if a disease was not widely known. QI LUO
Go to www.rarediseaseday.org
Be a part of the Rare Disease Day momentum – share the Rare Disease Day 2014 video and let’s show the world that it is entirely possible to Join Together for Better Care.
This year's video demonstrates the 2014 theme "CARE" showing the many facets of caring for people living with a rare disease and their families.
The video has been translated in 21 languages :
English - français - deutsch - español - italiano - português - nederlands - čeština - català - dansk - русский - العربية - magyar - suomalainen - român - български - ελληνικά - Türk - slovenščina - slovaški - 中国的