Clinical trialNCT05676099RecruitingObservational

TSC Biosample Repository and Natural History Database

SponsorNational Tuberous Sclerosis AssociationEnrollment5,000LymphangioleiomyomatosisTuberous Sclerosis

View the registry record on ClinicalTrials.gov

Summary

The lay summary the sponsor registered on ClinicalTrials.gov.

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.

clinicaltrials.gov ↗

Investigators

The overall officials registered on this study. Names that resolve to a findmyKOL profile link to it; the rest are shown as registered.

Steve Roberds, PhD
TSC Alliance
Principal Investigator
clinicaltrials.gov ↗

A profile link is shown only when the registered name resolves to a person record with a confident, namesake-checked match; ambiguous names stay unlinked.

Sites

26 registered facilities, with the per-site recruitment status where the registry publishes one. ClinicalTrials.gov does not publish per-site enrollment counts.

Canada

Centre Hospitalier de L'Université de Montréal
Montreal, Canada
Mark Keezer, MDMC, PhD
Recruiting
Sainte-Justine Université de Montréal
Montreal, Canada
Philippe Major, MD
Recruiting

United States

University of Alabama Birmingham
Birmingham, Alabama, United States
Martina Bebin, M.D., M.P.A.
Recruiting
Loma Linda University Children'S Hospital
Loma Linda, California, United States
David Young, MD
Recruiting
University of California Los Angeles
Los Angeles, California, United States
Rajsekar Rajamaraman, MD
Recruiting
Jack & Julia Center for Tsc, Oakland Children'S Hospital and Research Center
Oakland, California, United States
Completed
the Children'S Hospital
Denver, Colorado, United States
Kevin Ess, MD
Recruiting
Nicklaus Children'S Hospital
Miami, Florida, United States
Paula Schleifer, MD
Recruiting
Chicago Comer Children'S Hospital Neurogenetic Clinic, University of Chicago
Chicago, Illinois, United States
James Tonsgard, MD
Recruiting
University of Iowa Hospitals and Clinics
Iowa City, Iowa, United States
Michael Ciliberto, MD
Recruiting
Tsc Alliance
Silver Spring, Maryland, United States
Steven L Roberds, PhD
Recruiting
Boston Children'S Hospital
Boston, Massachusetts, United States
Mustafa Sahin, MD, PhD
Recruiting
Massachusetts General Hospital
Boston, Massachusetts, United States
Elizabeth Thiele, MD, PhD
Recruiting
Minnesota Epilepsy Group
Roseville, Minnesota, United States
Douglas Smith, MD
Recruiting
Children'S Mercy Research Institute
Kansas City, Missouri, United States
Mirza Waseem Baig, MD
Recruiting
Washington University in St. Louis
St Louis, Missouri, United States
Michael Wong, MD, PhD
Recruiting
New York University Medical Center
New York, New York, United States
Josiane LaJoie, MD
Recruiting
University of Rochester Medical Center
Rochester, New York, United States
Derek Bauer, MD
Recruiting
Cincinnati Children'S Hospital Medical Center
Cincinnati, Ohio, United States
Darcy Kreuger, MD, PhD
Recruiting
Cleveland Clinic Foundation
Cleveland, Ohio, United States
Ajay Gupta, MD
Recruiting
University of Pennsylvania Medical Center
Philadelphia, Pennsylvania, United States
Mersedeh Rohanizadegan, MD, MPH
Recruiting
Le Bonheur Children'S Hospital
Memphis, Tennessee, United States
Sarah Weatherspoon, MD
Recruiting
Scottish Rite Hospital for Children
Dallas, Texas, United States
Ashley Hackett, MD
Recruiting
Memorial Hermann-Texas Medical Center (university of Texas Houston)
Houston, Texas, United States
Hope Northrup, MD
Recruiting
Texas Childrens Hospital Baylor College of Medicine
Houston, Texas, United States
Howard Weiner, MD
Recruiting
Children'S National Medical Center
Fairfax, Virginia, United States
William McClintock, MD
Recruiting

Site investigator names are published by ClinicalTrials.gov only while a study recruits, so completed studies list sites without them.

Drugs studied

No drug or biological interventions are in our data for this study. It may test a procedure, device or behavioral intervention, or the intervention list isn't in our current snapshot. See the registry record ↗. Why? →

Registration & key dates

Registry attributes as recorded on the ClinicalTrials.gov study record.

Start: 31 Jan 2016
Primary completion: 31 Dec 2050
Completion: 31 Dec 2050
Last update posted: 24 Jun 2026
Registered enrollment: 5,000
Registry id: NCT05676099

clinicaltrials.gov ↗

Source: ClinicalTrials.gov, via the CTTI AACT database, data as of 24 Aug 2026. Registry facts are shown as registered by the study sponsor; findmyKOL does not interpret them.