Collection of biosamples and clinical data for tuberous sclerosis and lymphangioleiomyomatosis

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

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.

Why it matters

Who can join: the full rules

Inclusion Criteria:

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

Exclusion Criteria:

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Where it's running

• 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
• 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

Study contacts

• Principal investigator: Steve Roberds, PhD — TSC Alliance
• Study coordinator: Elizabeth Cassidy, MPH
• Email: ecassidy@tscalliance.org
• Phone: 301-562-9890

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Other studies for the same condition or treatment. Recruiting studies are listed first.

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.