TSC Biosample Repository and Natural History Database (NCT05676099)
TSC Alliance Tuberous Sclerosis Complex (TSC) Biosample Repository and Natural History Database
🩺 Plain-English Summary (8th-Grade Level)
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.
Who can join: Review the eligibility criteria below.
Location: University of Alabama Birmingham — Birmingham, Alabama
🧪 Interventions in This Study
- Phlebotomy (PROCEDURE)
- Buccal (cheek) swab (PROCEDURE)
- Genetic Testing (GENETIC)
- Tissue donation after routine clinical procedure (OTHER)
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria ↗
📍 All Participating Trial Locations (26 Sites)
Showing the first 25 of 26 sites.
- University of Alabama Birmingham — Birmingham, Alabama
- Loma Linda University Children's Hospital — Loma Linda, California
- University of California Los Angeles — Los Angeles, California
- Jack & Julia Center for TSC, Oakland Children's Hospital and Research Center — Oakland, California
- The Children's Hospital — Denver, Colorado
- Nicklaus Children's Hospital — Miami, Florida
- Chicago Comer Children's Hospital Neurogenetic Clinic, University of Chicago — Chicago, Illinois
- University of Iowa Hospitals and Clinics — Iowa City, Iowa
- TSC Alliance — Silver Spring, Maryland
- Boston Children's Hospital — Boston, Massachusetts
- Massachusetts General Hospital — Boston, Massachusetts
- Minnesota Epilepsy Group — Roseville, Minnesota
- Children's Mercy Research Institute — Kansas City, Missouri
- Washington University in St. Louis — St Louis, Missouri
- New York University Medical Center — New York, New York
- University of Rochester Medical Center — Rochester, New York
- Cincinnati Children's Hospital Medical Center — Cincinnati, Ohio
- Cleveland Clinic Foundation — Cleveland, Ohio
- University of Pennsylvania Medical Center — Philadelphia, Pennsylvania
- Le Bonheur Children's Hospital — Memphis, Tennessee
- Scottish Rite Hospital for Children — Dallas, Texas
- Texas Childrens Hospital Baylor College of Medicine — Houston, Texas
- Memorial Hermann-Texas Medical Center (University of Texas Houston) — Houston, Texas
- Children's National Medical Center — Fairfax, Virginia
- Centre Hospitalier de l'Université de Montréal — Montreal,
📞 Contact the Study Coordinator
Phone: (301) 562-9890
Email: ecassidy@tscalliance.org
Coordinator details come directly from the registered NIH protocol. Confirm the study is still recruiting before traveling.
💰 Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA § 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.
More studies in Tuberous Sclerosis
- Autism Spectrum Disorder (ASD) and Intellectual Disability (ID) Determinants in Tuberous Sclerosis Complex (TSC) — Birmingham, Alabama
- Study of Skin Tumors in Tuberous Sclerosis — Bethesda, Maryland
Explore by condition: All Tuberous Sclerosis clinical trials
💡 How to Participate
- Check the checklist above to see if you may qualify.
- Contact the study coordinator using the phone/email above.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.