Down Syndrome Prenatal Diagnosis Study

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Down Syndrome Prenatal Diagnosis Study
An anonymous web-based study to understand the experience and needs of individuals receiving a prenatal diagnosis of Down Syndrome (DS)
 
   
Anonymous Web-based Questionnaire - CLICK HERE
 
 
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
 
 
If you or your partner recently received a prenatal diagnosis of Down syndrome (DS), you have an opportunity to share your story here. Kathryn B. Sheets, MS, CGC and Blythe G. Crissman, MS, CGC are genetic counselors at Duke University Medical Center in Durham, North Carolina who are conducting a study to better understand patients’ experiences with prenatal diagnosis and making decisions for the pregnancy. Participation will improve our knowledge and help us to provide appropriate information, resources, and support to individuals in similar situations. Sharing your journey could benefit other individuals or couples going through a similar experience in the future. Participation in this study involves completing an anonymous, web-based questionnaire, which is managed by a secure, Duke approved program called REDcap. You may also print a copy of the survey to take offline.
 
Visit About the Study - For Patients to read more. If you have questions about this study or if would like additional counseling, you may contact us or if you would like to be contacted by us, please complete this contact form and fax to (919) 684-0964.

 
If you have questions about this study or if you would like additional counseling, you may contact us:
 
 
Katie Sheets, 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.