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NCT06160310Recruiting

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

Tuberous Sclerosis Complex and Lymphangioleiomyomatosis Pregnancy Registry

Source: ClinicalTrials.gov · Last updated 23 Jan 2026

Brief summary (registry, in English)

This study is an observational registry designed to gather information about Tuberous Sclerosis Complex (TSC) and Lymphangioleiomyomatosis (LAM) in pregnant women and their child.

Status (registry)
Recruiting
Study type
Observational
Enrollment
300 (estimated)
First submitted
16 Oct 2023
Start date
1 Jul 2023
Primary completion date
1 Jul 2028
Lead sponsor
David M. Ritter
NCT number
NCT06160310

What you commit to

  • Study type: Observational
  • Planned participants: 300
  • From 1 Jul 2023 to the primary completion date, 1 Jul 2028
  • 1 site in 1 country
  • Visits and tests: ask the trial team, the registry does not list them

Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.

Who cannot take part

Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.

Other

  • 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.

Who the study is looking for

  • 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.

Sex: Female · Does not accept healthy volunteers

Full criteria on ClinicalTrials.gov

Sites (1)

Sites in registry order. Pick your city on the disease page to sort them by distance.

SiteCityCountrySite status
Cincinnati Children's Hospital Medical Center
Coordinator of this site? Confirm its status		CincinnatiUnited StatesRecruiting

This page is information, not medical advice. Discuss any trial with your doctor.