TSC Biosample Repository and Natural History Database

RecruitingObservational study

TSC Alliance Tuberous Sclerosis Complex (TSC) Biosample Repository and Natural History Database

Who can join

All ages · All sexes

Full eligibility criteria

Inclusion Criteria:

* Diagnosis of tuberous sclerosis complex or lymphangioleiomyomatosis (sporadic LAM).

Exclusion Criteria:

\-

About the study

The TSC Biosample Repository collects and stores samples of blood, DNA, and tissues that scientists can request to use in their research. The samples we collect are all linked to clinical data in the TSC Natural History Database. The TSC Natural History Database captures clinical data to document the impact of the disease on a person's health over his or her lifetime. This data may be collected retrospectively or prospectively.

What is being tested

Phlebotomy (procedure)
Buccal (cheek) swab (procedure)
Genetic Testing (genetic)
Tissue donation after routine clinical procedure (other)

Sponsor: National Tuberous Sclerosis Association · Participants: 5,000 · Started: 2016-01

Contact the study team

Elizabeth Cassidy, MPH · Phone: 301-562-9890

Official record on ClinicalTrials.gov — NCT05676099

Locations in the U.S.

Alabama	University of Alabama Birmingham, Birmingham
California	Loma Linda University Children's Hospital, Loma Linda University of California Los Angeles, Los Angeles
Colorado	The Children's Hospital, Denver
Florida	Nicklaus Children's Hospital, Miami
Illinois	Chicago Comer Children's Hospital Neurogenetic Clinic, University of Chicago, Chicago
Iowa	University of Iowa Hospitals and Clinics, Iowa City
Maryland	TSC Alliance, Silver Spring
Massachusetts	Boston Children's Hospital, Boston Massachusetts General Hospital, Boston
Minnesota	Minnesota Epilepsy Group, Roseville
Missouri	Children's Mercy Research Institute, Kansas City Washington University in St. Louis, St Louis
New York	New York University Medical Center, New York University of Rochester Medical Center, Rochester
Ohio	Cincinnati Children's Hospital Medical Center, Cincinnati Cleveland Clinic Foundation, Cleveland
Pennsylvania	University of Pennsylvania Medical Center, Philadelphia
Tennessee	Le Bonheur Children's Hospital, Memphis
Texas	Scottish Rite Hospital for Children, Dallas Memorial Hermann-Texas Medical Center (University of Texas Houston), Houston Texas Childrens Hospital Baylor College of Medicine, Houston
Virginia	Children's National Medical Center, Fairfax

Conditions

From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.