Cure My Disease

Don't miss your cure!

 Log in / Sign up

Massive TSC data and tissue bank opens to researchers

NCT ID NCT05676099

Knowledge-focused Sponsor: National Tuberous Sclerosis Association Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study is building a large collection of blood, DNA, and tissue samples along with health records from up to 5,000 people with tuberous sclerosis complex (TSC) or a related condition called lymphangioleiomyomatosis. Participants can give blood or cheek swab samples and allow researchers to track their health over time. The goal is to provide scientists with the materials they need to better understand TSC and develop new treatments.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 5,000 people

The number the study aims to enrol. It can still change while the study runs.

Started

Jan 2016

Expected to finish

Dec 2050

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

An individual must have a diagnosis of tuberous sclerosis complex, based on the current clinical and genetic diagnostic criteria. The individual may enroll if they have a diagnosis of sporadic LAM. All persons with tuberous sclerosis complex are eligible to participate, such as individuals with limited decisional capacity.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * Diagnosis of tuberous sclerosis complex or lymphangioleiomyomatosis (sporadic LAM). Exclusion Criteria: \-

Get updates

Get notified about this study

Sign up to get updates when this study changes or when new studies for Lymphangioleiomyomatosis are added.

Our safety recommendation!

By submitting, you agree to our Terms of use

Conditions

The condition(s) this trial relates to.

lymphangioleiomyomatosis tuberous sclerosis tuberous sclerosis 1

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Lymphangioleiomyomatosis Tuberous sclerosis

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    25 sites in 2 countries. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Boston Children's Hospital

    RECRUITING

    Boston, Massachusetts, United States

  • Centre Hospitalier de l'Université de Montréal

    RECRUITING

    Montreal, Canada

  • Chicago Comer Children's Hospital Neurogenetic Clinic, University of Chicago

    RECRUITING

    Chicago, Illinois, United States

  • Children's Mercy Research Institute

    RECRUITING

    Kansas City, Missouri, 64108, United States

  • Children's National Medical Center

    RECRUITING

    Fairfax, Virginia, United States

  • Cincinnati Children's Hospital Medical Center

    RECRUITING

    Cincinnati, Ohio, United States

  • Cleveland Clinic Foundation

    RECRUITING

    Cleveland, Ohio, United States

  • Jack & Julia Center for TSC, Oakland Children's Hospital and Research Center

    COMPLETED

    Oakland, California, United States

  • Le Bonheur Children's Hospital

    RECRUITING

    Memphis, Tennessee, United States

  • Loma Linda University Children's Hospital

    RECRUITING

    Loma Linda, California, United States

  • Massachusetts General Hospital

    RECRUITING

    Boston, Massachusetts, United States

  • Memorial Hermann-Texas Medical Center (University of Texas Houston)

    RECRUITING

    Houston, Texas, United States

  • Minnesota Epilepsy Group

    RECRUITING

    Roseville, Minnesota, United States

  • New York University Medical Center

    RECRUITING

    New York, New York, United States

  • Nicklaus Children's Hospital

    RECRUITING

    Miami, Florida, United States

  • Sainte-Justine Université de Montréal

    RECRUITING

    Montreal, Canada

  • Scottish Rite Hospital for Children

    RECRUITING

    Dallas, Texas, United States

  • TSC Alliance

    RECRUITING

    Silver Spring, Maryland, 20910, United States

  • Texas Childrens Hospital Baylor College of Medicine

    RECRUITING

    Houston, Texas, 77030, United States

  • The Children's Hospital

    RECRUITING

    Denver, Colorado, United States

  • University of Alabama Birmingham

    RECRUITING

    Birmingham, Alabama, United States

  • University of California Los Angeles

    RECRUITING

    Los Angeles, California, 90095, United States

  • University of Iowa Hospitals and Clinics

    RECRUITING

    Iowa City, Iowa, United States

  • University of Pennsylvania Medical Center

    RECRUITING

    Philadelphia, Pennsylvania, United States

  • University of Rochester Medical Center

    RECRUITING

    Rochester, New York, 14642, United States

  • Washington University in St. Louis

    RECRUITING

    St Louis, Missouri, 63110, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.