Have you been pregnant with a child diagnosed with tuberous sclerosis complex (TSC)?
The TSC Alliance, in collaboration with Duke University’s TSC Center of Excellence, has launched a research study comparing pregnancy experiences among individuals who have been pregnant with a child diagnosed with TSC, including those who were and were not exposed to mTOR inhibitors (such as sirolimus or everolimus) during pregnancy. We are seeking participants who are willing to share their prenatal and postnatal experiences.
If you have been pregnant with a child with TSC, regardless of whether you took mTOR inhibitors during pregnancy, please consider participating in this research study to help us learn more about how these medications may affect the mother and the fetus during pregnancy. The study involves the completion of a one-time survey with an anticipated 20-25 minutes to complete, and will include an optional request for medical records to review more detailed information on your experience and outcomes.
This study is for mothers and children who may be eligible to participate if:
- You are the biological mother of a child with TSC
- Your child is age 10 or younger
- Your child was diagnosed with TSC before the age of 1 year
- You are willing to allow the study team to review your pregnancy care records and your child’s relevant medical records
- Or you are currently pregnant with a child with TSC and are willing to be contacted to participate after your child is born
Contact the research team to learn more about the study at: tscsurveystudy@duke.edu
Duke IRB Protocol Number: Pro00120405
This collaboration is part of the Reproductive and Perinatal Health (RPH) Initiative committed to improving care before, during, and after pregnancy.
If you have any questions please email RPH@tscalliance.org