What is a Pregnancy Registry and Why Should You Be in One?

Pill bottlesIt’s not about getting a gift – it’s about giving a gift.

Here’s the problem:

  • About 4.5 million pregnant women need to use prescription medication during their pregnancies to treat conditions such as arthritis, diabetes, depression, epilepsy, migraines, asthma, infections, etc.
  • Less than 10% of medications have good information about the safety and effectiveness of the medications we sometimes need to use during pregnancy.
  • Pharmaceutical companies do not test drugs on pregnant women. For new drugs, we have to rely on the studies conducted on animals for information about the drugs’ effects on pregnancies. For older drugs, we have to rely on the experiences of pregnant women who have used the drugs – but that information is not collected or shared in any systematic way. We usually only hear about the bad news, but not the good news.

You can be part of the solution:

  • A pregnancy registry is a study that gathers information from pregnant women who need to use medications during their pregnancies to improve their birth outcomes. 
  • If you are taking, or did take, a medication or a vaccine during your pregnancy, your experience can be very helpful to other pregnant women who may need to take it too.
  • Pregnant women can share their experiences with other pregnant women to help them have healthy pregnancies.

Here’s how:

  • Go to the FDA Pregnancy Registry website to see if the medication you are using (or used) has a pregnancy registry. If so, you can contact the registry and provide them with your information. This usually means filling out a questionnaire during your pregnancy and/or after your pregnancy.
  • It’s just as important to report positive pregnancy outcomes (normal, healthy live births; improved medical conditions) as negative outcomes (complications; birth defects; side effects). We want to know if the drug worked and caused no problems as well as if the drug didn’t work or did cause problems.
  • The more women who participate, the more we learn about the safety and the effectiveness of the medications we may need to use to have a healthy pregnancy and healthy baby.

Give the gift:

You can provide the gift of your experience to other pregnant women. Together, we can vastly improve the information we need to have healthy pregnancies and healthy babies.