Collection of biosamples and clinical data for tuberous sclerosis and lymphangioleiomyomatosis
TSC Alliance Tuberous Sclerosis Complex (TSC) Biosample Repository and Natural History Database
This study is collecting blood and tissue samples from people with tuberous sclerosis and lymphangioleiomyomatosis to help researchers learn more about these conditions and how they affect the body over time.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 5000 (estimated) |
| Sex | All |
| Sponsor | National Tuberous Sclerosis Association Academic / other |
| Locations | 26 sites (Birmingham, Alabama and 25 other locations) |
| Trial ID | NCT05676099 on ClinicalTrials.gov |
What this trial studies
The TSC Biosample Repository collects blood, DNA, and tissue samples linked to clinical data to enhance understanding of tuberous sclerosis complex (TSC) and sporadic lymphangioleiomyomatosis (LAM). This observational project aims to create a comprehensive biobank at the Van Andel Institute, facilitating research into the impact of TSC on various organs over a person's lifetime. The associated Natural History Database captures both retrospective and prospective clinical data, allowing for longitudinal studies that may lead to new treatment insights. Samples will be collected from recognized TSC clinics and other clinical partners.
Who should consider this trial
Good fit: Ideal candidates for this study are individuals diagnosed with tuberous sclerosis complex or sporadic lymphangioleiomyomatosis.
Not a fit: Patients without a diagnosis of tuberous sclerosis complex or sporadic lymphangioleiomyomatosis will not benefit from this study.
Why it matters
Potential benefit: If successful, this initiative could lead to improved treatments and management strategies for patients with tuberous sclerosis and lymphangioleiomyomatosis.
How similar studies have performed: Other studies focusing on biobanking and natural history databases for rare diseases have shown success in advancing research and treatment options.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Diagnosis of tuberous sclerosis complex or lymphangioleiomyomatosis (sporadic LAM). Exclusion Criteria: \-
Where this trial is running
Birmingham, Alabama and 25 other locations
- University of Alabama Birmingham — Birmingham, Alabama, United States (Recruiting)
- Loma Linda University Children's Hospital — Loma Linda, California, United States (Recruiting)
- University of California Los Angeles — Los Angeles, California, United States (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 (Recruiting)
- Nicklaus Children's Hospital — Miami, Florida, United States (Recruiting)
- Chicago Comer Children's Hospital Neurogenetic Clinic, University of Chicago — Chicago, Illinois, United States (Recruiting)
- University of Iowa Hospitals and Clinics — Iowa City, Iowa, United States (Recruiting)
- TSC Alliance — Silver Spring, Maryland, United States (Recruiting)
- Boston Children's Hospital — Boston, Massachusetts, United States (Recruiting)
- Massachusetts General Hospital — Boston, Massachusetts, United States (Recruiting)
- Minnesota Epilepsy Group — Roseville, Minnesota, United States (Recruiting)
- Children's Mercy Research Institute — Kansas City, Missouri, United States (Recruiting)
- Washington University in St. Louis — St Louis, Missouri, United States (Recruiting)
- New York University Medical Center — New York, New York, United States (Recruiting)
- University of Rochester Medical Center — Rochester, New York, United States (Recruiting)
- Cincinnati Children's Hospital Medical Center — Cincinnati, Ohio, United States (Recruiting)
- Cleveland Clinic Foundation — Cleveland, Ohio, United States (Recruiting)
- University of Pennsylvania Medical Center — Philadelphia, Pennsylvania, United States (Recruiting)
- Le Bonheur Children's Hospital — Memphis, Tennessee, United States (Recruiting)
- Scottish Rite Hospital for Children — Dallas, Texas, United States (Recruiting)
- Texas Childrens Hospital Baylor College of Medicine — Houston, Texas, United States (Recruiting)
- Memorial Hermann-Texas Medical Center (University of Texas Houston) — Houston, Texas, United States (Recruiting)
- Children's National Medical Center — Fairfax, Virginia, United States (Recruiting)
- Centre Hospitalier de l'Université de Montréal — Montreal, Canada (Recruiting)
- Sainte-Justine Université de Montréal — Montreal, Canada (Recruiting)
Study contacts
- Principal investigator: Steve Roberds, PhD — TSC Alliance
- Study coordinator: Elizabeth Cassidy, MPH
- Email: ecassidy@tscalliance.org
- Phone: 301-562-9890
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.