Tuberous Sclerosis Complex and Lymphangioleiomyomatosis Pregnancy Registry (TSC-LAM Registry)

Launched by DAVID M. RITTER · Nov 28, 2023

Keywords

ClinConnect Summary

The Tuberous Sclerosis Complex and Lymphangioleiomyomatosis Pregnancy Registry (TSC-LAM Registry) is a study aimed at collecting important information about pregnant women who have Tuberous Sclerosis Complex (TSC) or Lymphangioleiomyomatosis (LAM) and their babies. This research helps us understand how these conditions might affect pregnancy and the health of the child. The study is currently looking for female participants who are pregnant and meet specific criteria, such as having a confirmed diagnosis of TSC or LAM, or if their baby has a chance of being affected by TSC.

If you participate in this registry, you can expect to share your health information and experiences during your pregnancy. The study will help doctors and researchers learn more about TSC and LAM, which could lead to better care for other women and children in the future. It's important to know that this is an observational study, meaning that participants will be monitored without any experimental treatments being given. Your involvement could contribute significantly to understanding these conditions better!

Gender

FEMALE

Eligibility criteria

• Inclusion Criteria:
• • A pregnant woman with a clinical or genetic diagnosis of TSC as determined by the 2021 Consensus Guidelines (1)
• • A pregnant woman with a diagnosis of LAM
• • A pregnant woman with a variant of uncertain significance in TSC 1 or TSC 2
• • A pregnant woman who is pregnant and the fetus has a 50% chance of TSC as deemed by the PI or Sub-Is
• • A pregnant woman whose fetus is found to have concern for TSC secondary to rhabdomyomas, tubers, or congenital subependymal giant cell astrocytoma.
• • An infant born to an enrolled individual.
• Exclusion Criteria:
• • A pregnant woman without TSC who has used preimplantation genetic testing for TSC unless qualifies under inclusion criteria #4.
• • Infants diagnosed with TSC whose birth mother was not enrolled.