The Reproductive Health Initiative is vital to this TSC community for many reasons but most especially due to limited data around pregnancy & perinatal healthcare. My belief is the RPH will promote healthy pregnancy outcomes with multidisciplinary collaboration & community outreach. Our role in rare disease is advocacy & progress. Here we go!”
Danielle Clark, MPH, RD, Adult Resource Lead
The Reproductive and Perinatal Health (RPH) Initiative focuses on identifying key priorities associated with maternal fetal pregnancy-related complications in TSC and establishing recommendations for reproductive and perinatal care. Although pediatric and adult surveillance and management recommendations exist for TSC, there is a lack of consistency and paucity of evidence-based data to provide recommendations and surveillance of women with TSC and/or LAM during pregnancy.
A workshop held in March 2024 in Memphis, TN, brought together a committed group of clinical experts in maternal-fetal medicine, epileptology, genetics, nephrology and others to discuss published organ-specific risks associated with TSC/LAM in pregnancy. The meeting highlighted gaps in current research with a focus on the need to develop data-driven and expert-informed recommendations to guide clinical care. The group was separated into two Task Force teams based on areas of interest and expertise – Reproductive or Perinatal.
The insights gained from this effort marked a critical step toward advancing research and clinical guidance for women with TSC/LAM during pregnancy bringing together experts across multiple disciplines. The TSC Alliance RPH Taskforce will continue progress towards developing evidence-based recommendations to enhance care and empower people with TSC to make informed reproductive health decisions.
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 capture real-world experiences to provide a road map to better inform and educate the community and healthcare providers about TSC reproductive care.
Steps of the RPH Initiative
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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 & 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.
The RPH initiative is made possible thanks to the generous support from the Samuels Family Foundation.