Date posted: Wednesday 13 Aug 2014
Drexel University, in Philadelphia USA, are carrying out a study to learn more about how women cope following a termination for fetal anomaly, and the support they receive. They have provided the following information for women who may be interested in taking part:
Why are you doing this research study?
We want to learn more about how to help women who have ended a pregnancy after being diagnosed with a fetal medical problem. Women may experience many stresses during this pregnancy. They may feel alone as they go through the diagnosis procedures, make the decision to end the pregnancy and undergo the procedure itself. This study will help us learn more about how women cope and get support in the time after the termination.
What happens if I say yes, I want to be in the study? What am I being asked to do?
If you say yes, we will:
• ask you to answer some questions about yourself and your termination for fetal anomaly (TOPFA) experience. We will ask you about who offered you support and if you felt any distress as a result of ending the pregnancy.
There is no time limit to when you may have had this experience. We will also give you a chance to add any comments or thoughts on how to help another woman going through this experience and to the healthcare providers who take care of them.
How long will it take?
The survey may take up to 20 minutes and if any of the questions cause discomfort as you think about the experience, you may stop and return to the survey if you need to. A list of resources will be provided if you need them. There is no right or wrong answer to these questions.
What happens if I say yes, but change my mind later?
You can stop being in the study at any time.
Who will see my answers or my personal information?
The only people allowed to see your answers will be the people who work on the study and
people who make sure we run our study the right way. We will not collect your name or any other
information that can identify you.
You will not be contacted for any further information after the study is over.
Will I be paid for my time?
In order to protect your privacy, there will be no compensation for this study.
Is there any way being in this study could be bad for me?
There is a chance that:
• The questions could make you sad or upset.
• Someone could find out that you were in the study and learn something about you that you did not want others to know. However, this is an anonymous survey. We will not collect any information that can lead back to you directly.
• You should contact your primary care provider if you develop emotional distress from taking part in the survey.
What if I have questions?
Please email the head of the study, Marie McClay DrNP-c, WHNP-BC at:
By moving forward into the study link you are saying:
• You agree to be in the study.
• You have read the information in this document and have no more questions.
You know that:
• You can skip questions you do not want to answer.
• You can stop answering our questions at any time. You can return to the study at a later time to finish the study.
• You can call the office in charge of research at 215-762-5598 if you have any questions about the study or about your rights.
Information for Research Subjects Eligibility
You can be in this study if you are 18 years or older and have ended a pregnancy between 15 and 28 weeks of pregnancy after you found out that you had a fetal medical problem.
If you want to be in this study, please go to the following link:
This study has IRB approval and is being done by researchers who work at Drexel University, Philadelphia.
Return to previous page