About the Study - For Patients

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 Anonymous Web-based Questionnaire - CLICK HERE
 
Download and print a copy of the survey to take offline
 
** SURVEY WILL BE AVAILABLE UNTIL DECEMBER 31, 2014**

 

You ARE ELIGIBLE to participate in this study if:
  • you/your partner have received a definitive diagnosis of Down syndrome during a pregnancy by:
    • chorionic villus sampling (CVS)
    • amniocentesis
    • noninvasive prenatal diagnosis testing (NIPT) (MaterniT21, Harmony, Verifi)
  •  the pregnancy that was diagnosed with DS prenatally:
  • is currently ongoing 
  • resulted in a stillbirth, termination, or miscarriage
  • resulted in the birth of a child with DS
 
 You are NOT ELIGIBLE to participate in this study if:
  • you/your partner did not undergo a CVS, amnio or NIPT with a diagnosis
  • a diagnosis of DS was made for your child after birth

 

Dear Respected Patient,

If you or your partner recently received a prenatal diagnosis of Down syndrome (DS) and had some interaction with a genetic counselor during the pregnancy, you are asked to participate in a study being conducted by two genetic counselors, Kathryn B. Sheets, MS, CGC and Blythe G. Crissman, MS, CGC, of Duke University Medical Center. This study is funded by the Jane Engelberg Memorial Fellowship, a grant awarded by the National Society of Genetic Counselors.

WHY IS THE STUDY BEING DONE?
You are being asked to participate in a study because you, or your partner, have received a prenatal diagnosis of Down syndrome (DS). This study will gather information from you about your experience in order to improve the medical profession’s understanding of your unique needs and the clinical services provided to patients receiving a prenatal diagnosis of DS.
 

WHAT IS INVOLVED IN THE STUDY?
Your participation in this study involves completing an anonymous, web-based questionnaire. “Anonymous” means that we will not collect any personal information that identifies you. The questionnaire will take approximately 30 minutes to complete. You can stop, save, and re-enter the questionnaire at any time. The questions will ask you about the pregnancy and prenatal diagnosis, your experience with genetic counseling, what things are most important when making decisions about the pregnancy, and what resources you found most helpful during this time. You can skip any question that you do not wish to answer.

WHAT ARE THE RISKS AND BENEFITS OF PARTICIPATING?
There is a chance that you could experience unanticipated distress or may be uncomfortable responding to a question. We understand that this is a difficult time for you, and you may not be ready to share your experience. You can exit and re-enter the survey at a later time, or stop taking the survey at any time. You may also contact us for additional counseling if you need it or if you would like to be contacted by us, please complete this contact form and fax to (919) 684-0964.

There is potential therapeutic benefit to you from participating in this study. Participants in similar studies have found participation in research to be healing, empowering, validating, helpful, and insightful. For some, participating in research helped to make their experience more meaningful or give it purpose. Sharing your journey could also benefit other individuals or couples going through a similar experience in the future.
 

Anonymous web-based questionnaire
Download and print a copy of the survey to take offline

DO YOU HAVE ADDITIONAL QUESTIONS OR NEED MORE COUNSELING?

Katie Berrier, MS, CGC                                  Blythe Crissman, MS, CGC
Certified Genetic Counselor                           Certified Genetic Counselor
Office: (919) 681-1984                                Office: (919) 681-1976
Pager: (919) 970-1791                                 Pager: (919) 970-5048
Email:  Katie.Sheets@duke.edu                      Email:  Blythe.Crissman@duke.edu


 

 

This study has been supported by the 2013 Jane Engelberg Memorial Fellowship, an annual grant from the Engelberg Foundation to the National Society of Genetic Counselors, Inc. Supplemental patient materials are provided with support from: Triangle Down Syndrome Network of North Carolina; National Society of Genetic Counselors, Inc.  Perinatal Special Interest Group Annual Grant Award, National Down Syndrome Adoption Network.