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Ernst Oppenheimer Street
Tell: 011 616 1458
To view the first Newsletter for 2013 please click on the below link:
Newsletter 1- 2013
Our annual publication " Sibaleni nathi" or Count us in has been released. The 2012 magazine can be accessed electronically please click on the link: http://issuu.com/sibaleninathi/docs/sibaleni_nathi_2012/1#share
NDSS Establishes Criteria to Evaluate Companies with Non-Invasive Prenatal Diagnostic Tests for Down Syndrome
The National Down Syndrome Society (NDSS) recognizes that many companies, both within the United States and abroad, are developing new non-invasive blood tests that might be able to detect Down syndrome prenatally. NDSS appreciates that these tests are likely to be safer for pregnant women than the current invasive options of chorionic villus sampling and amniocentesis. However, before these new tests are made commercially available, companies should first meet all of the following criteria:
The noninvasive prenatal diagnostic (NIPD) tests should first undergo rigorous double-blind, case-controlled trials, and the sensitivity, specificity, positive and negative predictive values should be published in a respected peer-reviewed medical journal. The company performing the NIPD test should clearly list these values in its marketing and informational materials to healthcare professionals and the general public.
After publication(s) in peer-reviewed medical journals, the NIPD should be clearly marketed for only the form of Down syndrome that is being detected. For a test to be called a “Down syndrome test,” all forms of Down syndrome—trisomy 21, translocation Down syndrome, and mosaic Down syndrome—must be evaluated.
The decision whether to have NIPD performed must be that of the pregnant woman and her significant other, as desired and as appropriate. The decision should remain strictly confidential and voluntary.
All pregnant women should be fully informed as to the purpose, limitations, and expense of the NIPD. They should be told how the test is performed, when such a result will be available, and how that result will be delivered. Each pregnant woman opting to proceed with NIPD should sign an informed consent, which should include, at minimum, this understanding. The company performing the test should not accept or process any samples without first receiving a signed informed consent.
If a NIPD result suggests, but does not confirm with near 100% accuracy, the diagnosis of Down syndrome, the company should emphasize in the reported results that the pregnant woman should be offered an invasive diagnostic test, such as chorionic villus sampling or amniocentesis, if she desires to confirm the result and her physician feels such a procedure is safe given her medical history.
The National Society of Genetic Counselors, the American College of Medical Genetics, the American Congress of Obstetricians and Gynecologists, the National Down Syndrome Society, and the National Down Syndrome Congress formed a Consensus Group to identify material that offered balanced, rigorous, comprehensive, and up-to-date information for all expectant parents who receive a prenatal diagnosis of Down syndrome. The Consensus Group helped prepare "Understanding a Down Syndrome Diagnosis" as the material. If a NIPD result suggests or confirms a form of Down syndrome, the company performing the test must ensure that the pregnant woman’s ordering healthcare provider receive, no later than 24 hours after receiving the results, this material and/or other material(s) that have been prepared by the Consensus Group. The ordering healthcare provider should be encouraged to share the material with the pregnant woman after delivering the results.
In its marketing and informational materials, the company performing the test must make clear that all women have the absolute right to continue a pregnancy after a definitive prenatal diagnosis. Women should never be subjected to unwanted pressure from healthcare professionals or others concerning this decision.
The company should demonstrate a commitment to educating healthcare professionals on how to best communicate a prenatal diagnosis of Down syndrome to expectant parents using available evidence-based materials.Healthcare professionals should be trained to deliver the diagnosis in a nondirective manner so that women can make informed decisions about their pregnancies.
OTHER NDSS STATEMENTS on PRENATAL TESTING:
Prenatal Blood Test: Sequenom and Stanford University: http://ndss.org/index.php?option=com_content&view=article&id=153%3Aposition-papers&catid=54%3Apublic-relations&Itemid=140&limitstart=4
Prenatal Testing: http://ndss.org/index.php?option=com_content&view=article&id=153%3Aposition-papers&catid=54%3Apublic-relations&Itemid=140&limitstart=5
American College of Obstetricians and Gynecologists (February 14, 2007): http://ndss.org/index.php?option=com_content&view=article&id=153%3Aposition-papers&catid=54%3Apublic-relations&Itemid=140&limitstart=3
Skotko BG, Kishnani PS, Capone GT for the Down Syndrome Diagnosis Study Group, 2009. Prenatal Diagnosis of Down Syndrome: How Best to Deliver the News. American Journal of Medical Genetics Part A, 149A:2361-2367.
Toys"R"Us Toy Guide for Differently-Abled Kids®
For nearly 20 years, Toys"R"Us, Inc. has provided parents, caregivers and gift-givers with toy recommendations for children with special needs through the Toys"R"Us Toy Guide for Differently-Abled Kids®. This month, the company launched the 2011 edition of the Guide, featuring actress and philanthropist Eva Longoria on the cover alongside Elijah De La Cerda, a 5-year-old boy with Down syndrome from Fresno, California. Released annually, this complimentary resource is created with guidance from the National Lekotek Center, a nonprofit organization dedicated to making play accessible to children of all abilities.
The Guide is available in Toys"R"Us® and Babies"R"Us® stores nationwide and online, in English and Spanish, at ToysRUs.com/DifferentlyAbled.
All items in the Guide are paired with icons to indicate which skills that can be developed during playtime. This year's edition offers more toys than ever before, selected for their ability to help kids build critical skills, including fine and gross motor, social, creativity, auditory, language and more. The Guide also includes the "Top Ten Tips for Buying Toys" from the National Lekotek Center and "Safe Play Tips for Children with Special Needs."
Toys"R"Us, Inc. has a long history of supporting NDSS through the Toys"R"Us Children's Fund, a public charity affiliated with the company.
Toys"R"Us wants to make it easy for all groups affiliated with NDSS to receive complimentary copies of the Toys"R"Us Toy Guide for Differently-Abled Kids®.
We invite you to send us an email at email@example.com make a request for your group. Guides are available in cases of 250 each, and you may order as many cases as you need. Smaller amounts may be shipped upon request.
Please provide us with the following information when making your request:
Subject line of email: Request for Toys"R"Us Guides
Body of email: Full name, the name of your affiliation, a "ship to" street address (no P.O. Boxes), a contact phone number, an email address, number of Guides you are requesting, and date needed by (if you are ordering for a Buddy Walk® or other event)
Your contact information will be forwarded to Toys"R"Us, who will ship the complimentary Guides to you. Happy shopping!