Tuberous Sclerosis Complex and Lymphangioleiomyomatosis Pregnancy Registry
Status: Recruiting
Location: See location...
Study Type: Observational
SUMMARY
This study is an observational registry designed to gather information about Tuberous Sclerosis Complex (TSC) and Lymphangioleiomyomatosis (LAM) in pregnant women and their child.
Eligibility
Participation Requirements
Sex: Female
Healthy Volunteers: f
View:
• 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.
Locations
United States
Ohio
Cincinnati Children's Hospital Medical Center
RECRUITING
Cincinnati
Contact Information
Primary
Molly S Griffith, BA
molly.griffith@cchmc.org
513-636-9669
Backup
Adrienne Victory
adrienne.victory@cchmc.org
513-636-8016
Time Frame
Start Date: 2023-07-01
Estimated Completion Date: 2029-07-01
Participants
Target number of participants: 300
Related Therapeutic Areas
Sponsors
Leads: David M. Ritter