What does NIFTY stand for?
NIFTY stands for National Institutes of Health Fetal Cell Study.

What is the NIFTY study?
NIFTY is a study to determine if fetal cells found in a pregnant woman’s blood can be used to determine if her fetus has a chromosome abnormality such as Down syndrome or a genetic condition such as Tay Sachs disease of cystic fibrosis. Some facts about fetal cells include:

• Cells from the fetus cross the placenta and are circulating in a pregnant woman’s blood stream.
• There is approximately 1 fetal cell per 100,000 to 1 million of mom’s cells. This means fetal cells are a rare type of cell in mom’s blood stream.
• We have laboratory procedures available that allow us to recognize the fetal cells in mom’s blood, separate the fetal cells from mom’s blood cells and test chromosomes and/or genes of those fetal cells to determine if there is a genetic problem with the fetus.

What we don’t know and the purpose of the NIFTY study is to see if using fetal cells from mom’s blood is a good way to diagnose a chromosome abnormality or genetic condition in a fetus. This may then decrease the number of invasive tests like chorionic villus sampling or amniocentesis that need to be performed.

How can I participate in this study?
Several things are required of you, if you want to participate in the NIFTY study.

• To be eligible to participate, you must be carrying a single fetus, be between 10 to 24 weeks pregnant and must have an indication for prenatal testing.
• You must read and sign the study consent form.
• Answer a few questions regarding your pregnancy and family history.
• Give a small amount of blood (about 5 teaspoons) that will be drawn from a vein in your arm.

Someone from our staff may be contacting you and/or your physician after the birth of you baby to find out about the outcome of your pregnancy.

Can taking blood from me hurt my fetus or me?
No. Taking blood from pregnant women is a safe procedure and is being done to women all the time during pregnancy. Sometimes, patients may experience minor discomforts and a bruise may develop around the area where the blood was taken. Some people may also feel faint or dizzy after having blood taken.

Does is cost for me to participate in this NIFTY study?
No. To participate in the NIFTY study is free.

Will I be paid to participate in the NIFTY study?
No. Patients who participate in the NIFTY study are not paid. Your participation is strictly voluntary.

Can I have the results?
No. NIFTY is a “non disclosure” study. This means the results are not available to patients or their physicians. Because the techniques to obtain fetal cells are investigational, the results cannot be used to make decisions about pregnancy care.

How are my results used?
You must first understand that your results and your identity will be kept confidential. Results from all patients participating in the NIFTY study are combined in order to determine if fetal cell testing for genetic conditions works. Because the data are combined, it will not be possible to tell which results are yours.

If I participate in the study and have questions later, is there someone I can talk to?
Yes. On the consent form are the phone numbers of the Study’s Principal Investigator and his designees. These individuals are available to answer any questions you may have regarding the study.

If you have further questions regarding the NIFTY study, feel free to ask one of the genetic counselors or physicians. You may also call the study principal investigator or study coordinator at (215) 762-4000.