Star Legacy Foundation

Information for Patients

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Pregnancy Research Project

The goal of the Pregnancy Research Project is to accelerate research.  It was created after many discussions with health are providers, researchers and organizations that have a common goal of collecting data in a way that would be most helpful to moving research forward.  By enrolling in this program, the information about your pregnancies may be used in dozens of research studies around the world.

How It Works

Participants give us permission to request the medical records from your pregnancy(ies).  This will include prenatal records, ultrasound or other medical images, laboratory test results, hospital and delivery records, and information about your baby’s first days if your baby was born alive.  The information in your records will be entered into the database by health professionals who have been trained in data abstraction.

We also ask participants to complete an online survey.  The survey takes about 30 minutes to complete and is available online or in print format.  If you prefer a nurse to ask you the questions over the phone, that is also an option.  The questions will be about your pregnancy experience.  We want to learn information you may have about your pregnancy that is not included in the medical records.

Researchers with IRB (ethics committee) approved studies may apply to obtain specific information meeting criteria for their studies.  The researchers will only see de-identified data (information without names or other identifying information).

You may withdraw your participation in any part of the Pregnancy Research Projec at any time.

Who Can Participate?

Any woman who has had a pregnancy that lasted at least 12 weeks in the last 15 years or is currently pregnant at 12 or more gestational weeks is eligible to enroll.

What is a “Living Database”?

We want the information in the Pregnancy Research Project to be current and of the most use.  You may choose to be contacted by the Pregnancy Research Project if we learn of studies you might be eligible for that require additional information.  You will not be obligated to participate in future studies, you will only be made aware of them and provide instructions on participation if you so wish.

Additionally, we would like to have yearly updates from participants to learn if any new information is available that may help us better understand your pregnancy.  You will receive an email reminder annually to update your information.  If you have had another pregnancy you will be asked to consider also including information about that pregnancy in the Pregnancy Research Projec.

Thank you for contributing to science, public health, and medical research.  Working together, we can make discoveries that will positively affect health outcomes for mothers and babies for many generations to come.

For more information, contact us at research@starlegacyfoundation.org or call 952-715-7731

 

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