The TSC Alliance has launched a Reproductive and Perinatal Health Initiative committed to improving care provided to women with TSC before and during pregnancy.
If you are a woman or a caretaker of a woman with TSC between the ages of 18 and 59 living in the US or Canada, please complete this short 10-minute survey to help us improve information provided to women with TSC. The survey is for women who have been pregnant, are currently pregnant, or have ever considered a pregnancy.
Access the survey here.
The Reproductive and Perinatal Health (RPH) Initiative seeks to identify key priorities associated with maternal fetal pregnancy-related experiences in TSC and establish recommendations for reproductive and perinatal care.
One important aspect of the RPH initiative is to learn about a woman’s experience with TSC before and during pregnancy through a series of short surveys. These surveys will capture real-world experiences to provide a road map to better inform and educate the community and healthcare providers about TSC reproductive care. The first survey will focus on pre-pregnancy and the experiences and perceptions of women with TSC. This survey is open through April and available in English, Spanish and French.
Steps of the RPH Initiative
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The RPH initiative is made possible thanks to the generous support from the Samuels Family Foundation.
For questions about the RPH program or to sign up to receive additional information about upcoming reproductive and perinatal programs, please email RPH@tscalliance.org.
The RPH Initiative is also seeking biosamples from mothers and babies with TSC (e.g., cord blood, newborn dry blood spots, whole blood) to contribute to the TSC Natural History Database and Biosample Repository. These samples will be used to address unanswered questions on TSC during the pregnancy and perinatal periods. If you are mother with TSC and/or expecting a baby with TSC and are interested in providing a sample for this effort, please consider enrolling to the TSC Natural History Database & Biosample Repository by emailing biosample@tscalliance.org.