About the pamphlet

Pamphlet fulfills an unmet need for pregnant women and families
Pamphlet highlights new blood tests are for high-risk pregnancies
How the pamphlet was created
Future updates and distribution of the pamphlet

The purpose of the Down Syndrome Prenatal Testing Pamphlet is to provide current, accurate, and free information about Down syndrome to pregnant women. The pamphlet is available in English and Spanish, and in both print and electronic formats. The English and Spanish pamphlets can be viewed or downloaded on this website.

The Global Down Syndrome Foundation and the National Down Syndrome Congress believe this jointly created and distributed pamphlet will fulfill a critical need for pregnant women and families.

Pamphlet fulfills an unmet need for pregnant women and families

Research in the U.S. shows the majority of doctors and medical students receive little or no training related to prenatal diagnosis for Down syndrome, and parents often receive inaccurate information about the diagnosis.

The challenges of providing pregnant women with up-do-date, accurate information about Down syndrome was elevated to a national level when in 2008, Congress enacted the Prenatally and Postnatally Diagnosed Conditions Awareness Act, Public Law 110-374. The Act highlighted the need to offer written information that health care providers could give to parents with a prenatal or postnatal diagnosis of Down syndrome concerning the range of outcomes for those living with Down syndrome to include physical, developmental, educational and psychosocial as well as contact information regarding support services. The Act authorized the Secretary of the U.S. Department of Health and Human Services to offer grants, contracts and cooperative agreements to eligible entities listed in the Act. The bill shared the bipartisan sponsorship of Sens. Ted Kennedy (D-Mass.) and Sam Brownback (R-Kan.), which resulted in the bill’s nickname, Kennedy-Brownback..

“We believe that this pamphlet goes a long way in satisfying the 2008 Prenatally and Postnatally Diagnosed Conditions Awareness Act,” 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.”

Pamphlet highlights new blood tests are for high-risk pregnancies

There has been widespread confusion regarding the accuracy of the new non-invasive 10-week blood tests for Down syndrome. The Prenatal Testing Pamphlet for Down Syndrome addresses the confusion with the facts:

First, these new tests are screening tests and not diagnostic tests. In other words, you cannot know for sure if your baby has Down syndrome with these screening tests. There are two diagnostic tests that can tell you with almost 100% accuracy if your baby will have Down Syndrome – an amniocentesis test or the chorionic villus sampling test.

Second, the new non-invasive blood tests can be up to 99% accurate but only in “high-risk” pregnancies.  “High risk” is when a pregnant woman is of advanced maternal age (over 38 based on the prenatal testing research results), has had a different prenatal screening test showing the chance of having a baby with Down syndrome is increased, or has one or more relatives with Down syndrome. The new non-invasive blood tests are not recommended for women with low-risk pregnancies because their accuracy has not yet been demonstrated in the medical community.

It is important that medical professionals inform pregnant women about the pros and cons related to prenatal testing and about the accuracy associated with the new non-invasive blood tests for Down syndrome.

Several companies are working on developing a diagnostic blood test for Down syndrome, and the Global Down Syndrome Foundation and the National Down Syndrome Congress will continue to monitor such developments, and update the Down Syndrome Prenatal Testing Pamphlet accordingly.

How the pamphlet was created

There are many excellent resources available online and in book format that speak to prenatal diagnosis and/or Down syndrome. However, there has not been a simple, easy to read, easily updated, free pamphlet that is available directly and distributed through medical professionals to pregnant women.

In order to fill this void, the Global Down Syndrome Foundation and the National Down Syndrome Congress have created and will jointly distribute the Down Syndrome Prenatal Testing Pamphlet.

The two organizations worked together for six months to create the pamphlet. They reviewed materials representing other conditions and diseases, and enlisted the help of medical professionals, researchers, Down syndrome experts, and parents. In addition, the organizations created a Down syndrome community survey. Over 200 detailed survey responses from the Down syndrome community were received and reviewed in detail. The results of the Down syndrome community survey provided valuable input that is clearly reflected in the pamphlet’s final version.

Michelle Whitten, Executive Director of the Global Down Syndrome Foundation, spoke to the process, “Providing prenatal testing information for Down syndrome can be politically charged. However, over 90% 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.”

Future updates and distribution of the pamphlet

In addition to monitoring the latest prenatal tests, the Global Down Syndrome Foundation and National Down Syndrome Congress will monitor how useful the Down Syndrome Prenatal Testing Pamphlet is to pregnant women and families.

After an appropriate period of time the pamphlet will be updated with several important inputs – (a) information about new prenatal tests or new information on current tests, (b) surveys and focus groups results regarding how pregnant women rate the pamphlet, and (c) distribution success.

The Global Down Syndrome Foundation and the National Down Syndrome Congress are determined to have the pamphlet presented to pregnant women through various distribution outlets. To this end, the organizations are working with various medical organizations to distribute the pamphlet nationally and locally.