Pregnancy Risk Network of Ferre Institute: Working with women, families, and healthcare providers to reduce birth defects

The Pregnancy Risk Network (PRN) is a comprehensive teratogen service funded by the NYS Department of Health. This free telephone service was established in 1989 to provide information about the risks of exposure that might affect the developing fetus (a teratogen ). Specially trained staff is available to answer questions and provide information.

It is estimated that, on the average, women have three exposures to over the counter or prescription medications during each pregnancy. Multiple forms of exposures are common and require complex risk assessment. Ten percent of birth defects can be attributed to prenatal exposures.

In the last 25 years, much has been learned about exposures (e.g. chemicals, medications, radiation, infectious agents) and their effects on a developing pregnancy. For many pregnant women, information concerning exposures is reassuring. For women whose exposures may raise some concern, recommendations for follow-up care are offered and when needed, referrals to additional specialists. Information that is provided to callers is evidenced based and current. The PRN is part of a national network of teratogen information specialists, OTIS (Organization of Teratogen Information Specialists- www.otispregnancy.org).

Early identification of new teratogens and notification to manufacturers and the medical community can have a substantial impact on reducing the burden of unexpected birth outcomes. The PRN, as a member of OTIS, also can direct women to research efforts to understand the risks of types of medication and national registries for unique exposures.

Finally, the PRN has a long history of collaborating with many other NYS agencies committed to reducing the impact of birth defects:

NYS Department of Health-Bureau of Women's Health

NYS Genetics Program

PEDECS
(585) 275-3638
University of Rochester Medical Center
Department of Obstetrics and Gynecology
601 Elmwood Ave.
Rochester , NY 14642-8668

NYS Congenital Malformation Registry

NYS Office of Alcoholism and Substance Abuse Services

Office of Mental Retardation and Developmental Disabilities

NYS Perinatal Association and Regional Perinatal Networks

March of Dimes

American College of Obstetricians and Gynecologists

Home

Why is the PRN important to New York State residents?

In New York State, each year approximately 125,000 pregnancies are at risk of inadvertent exposures to agents that may cause birth defects. Furthermore, research shows that all pregnant women experience about three exposures during a "routine" pregnancy. These exposures can be medications, environmental exposures, workplace exposures, illnesses or infections, alcohol or other drugs and other exposures such as hair dye and skin care products. While some of these exposures could be avoided, others such as medications for medical treatment are necessary for the mother's well being. Our goal is to identify those exposures that increase the risk of birth defects and provide women and their physician's accurate information so that together, we can improve pregnancy outcomes in New York State.

History

For more than a decade this service primarily served the western NY region. The project took it's first steps to expand services in 2000 with encouragement from March of Dimes and New York State Perinatal Association. By 2002, the Pregnancy Risk Network (PRN) became a project of Ferre Institute so as to provide a new infrastructure to expand this comprehensive teratogen information service (TIS) to men and women of reproductive age and their healthcare providers throughout New York State (NYS). Over the last few years, the PRN has taken important steps to assuring that everyone has access to this unique service.

Meet our Teratogen Information Specialists

Mark Roth is a teratogen information specialist with the Pregnancy Risk Network of Ferre Institute. He brings his diverse background and talents to this interdisciplinary role. He is a member of the Organization of Teratogen Information Specialists (OTIS) and he is an active member of the OTIS Education Committee. He has completed the Harvard Teratogen Course and his teratogen interests span from pharmacogenomics to maternal metabolism as a modifier. Mark is always eager to fully research and answer questions from callers.

Caller Comments

"I used the service twice during my last pregnancy and was very satisfied with results. The existence of this program allowed me to maintain my personal health by taking the drugs I needed and at the same time gave me peace of mind that my baby was not being harmed. I can not imagine going through another pregnancy without having access to the Pregnancy Risk Network."

Don't physicians or other service providers for women in NYS provide this information?

No. Most physicians do not receive course work concerning exposures in pregnancy in their training. In addition, the body of knowledge concerning exposures is large, complex, and ever changing. These challenges, coupled with the time required to locate, review and interpret the data on each exposure is often overwhelming for the physician in today's healthcare setting.

The staff of the PRN works collaboratively with physicians, genetic counselors, NYS Department of Health, Perinatal Networks, Poison Control Centers, March of Dimes and many other community groups throughout New York State to maximize comprehensive care for the woman of reproductive age.

"While taking a medication tenormin (Atenolol), I found out that I was pregnant. A pharmacy pamphlet stated that this med may cause fetal defects. As a concerned mom-to-be, I needed reassurance. My Obstetrician offered his advice to call PRN. The knowledge and reassurance I received from the PRN gave me the healthy peace of mind I needed for the remainder of my pregnancy."

How does information and education change behavior?

Information and education can assist a woman and her healthcare provider make informed decisions during the pregnancy. A study completed by Koren in 1995 found that when provided accurate information from a service like the Pregnancy Risk Network, women significantly reduce the number of terminations. Identifying potential risk factors can also help a woman and her healthcare provider be informed of potential newborn or lifelong complications. Many teratogens (agents that when used during pregnancy increase the risk to the baby) cause minor malformations that may not impair function. Often times, the risk is low, meaning that few exposed fetuses are actually affected. All this information can assist a woman in making healthy choices for her and her family.

"I have called the PRN for 8 years now. I have 4 healthy children and am here to say the teratology service (PRN) was an excellent source for me for each child. I am grateful to them for this essential service. This is the age of information and information is power!"

For more information regarding the services we offer, to contact our Teratogen Information Specialists with a question or to be added to our healthcare provider mailing list you may use our new inquiry form. You will receive an email acknowledgement within 24 hours of sending us your inquiry. Once our staff processes your form we will contact you.