The Global Down Syndrome Foundation has partnered with the National Down Syndrome Congress to publish an informational pamphlet about prenatal testing for Down syndrome.
The Global Down Syndrome Foundation and the National Down Syndrome Congress announced the English and Spanish publication of the first Down Syndrome Prenatal Testing Pamphlet. The hallmark pamphlet will be distributed electronically and in print format nationally through medical professionals, as well as available directly to pregnant women and families.
The Down Syndrome Prenatal Testing Pamphlet is intended to eliminate confusion at a time when advice and guidance can vary dramatically from doctor to doctor and counselor to counselor. Recent research shows that the majority of medical students and doctors do not receive adequate training in prenatal diagnosis for Down syndrome and that parents often receive inaccurate information about the diagnosis.
“Although prenatal testing for Down syndrome has been available in the United States since the 1970s, there has not been an easy-to-read, easy-to-update pamphlet available for pregnant women distributed through the offices of medical professionals. The pamphlet that the Global Down Syndrome Foundation and the National Down Syndrome Congress are providing will be a much needed and welcomed resource,” said Nanette F. Santoro, M.D., chair of the department of Obstetrics and Gynecology at the University of Colorado School of Medicine.
The pamphlet was designed by a group of medical professionals, researchers, Down syndrome experts, and parents over a six-month period. Through the websites, mailing lists, and newsletters of the Global Down Syndrome Foundation and the National Down Syndrome Congress, more than 200 respondents from the Down syndrome community weighed in on a draft version of the pamphlet before its finalization.
Michelle Whitten, executive director of the Global Down Syndrome Foundation, explains, “Providing prenatal testing information for Down syndrome can be politically charged. But over 90 percent of survey respondents were on the same page about getting accurate information into the hands of pregnant women and applauded our efforts. I believe that our organization and the National Down Syndrome Congress have been very respectful about listening to our community’s hopes and fears and providing an even-handed resource. Of course it is important to remember that our number one audience must be pregnant women.”
“We believe that this pamphlet goes a long way in satisfying the 2008 Prenatally and Postnatally Diagnosed Conditions Awareness Act co-sponsored by Senators Edward Kennedy (D-Mass.) and Sam Brownback (R-Kan.),” said David Tolleson, executive director of the National Down Syndrome Congress. “Our members and friends have been extremely supportive of this joint initiative with the Global Down Syndrome Foundation, and we believe tens of thousands of women and families will benefit from having the current, accurate information presented in the pamphlet.”
The pamphlet also dispels the notion that new non-invasive 10-week blood tests for Down syndrome are diagnostic or 100 percent accurate. In fact, new blood tests on the market have shown high levels of accuracy only within a defined high-risk population (e.g. pregnant women over the age of 38). These tests are not recommended for women with low-risk pregnancies because their accuracy has not yet been demonstrated.
The Global Down Syndrome Foundation and the National Down Syndrome Congress will continue to measure the impact of the pamphlet through follow-up surveys and to monitor advances in prenatal testing, and the pamphlet will be updated as appropriate. The pamphlet format allows for easy updates and distribution.
Over the next several months, both organizations will be providing additional links and resources associated with a prenatal diagnosis of Down syndrome. For free downloads of the pamphlet or to learn more, visit downsyndrometest.org.
The Global Down Syndrome Foundation is a public nonprofit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Formally established in 2009, the Foundation’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the U.S. committed to research and medical care for people with the condition.
Founded in 1973, the National Down Syndrome Congress is the oldest national organization for people with Down syndrome, their families, and the professionals who work with them. A 501(c)(3) non-profit advocacy organization, the NDSC provides free technical support and information about issues related to Down syndrome throughout the lifespan, as well as on matters of public policy relating to disability rights.
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