Racial differences in the dermatological manifestations of tuberous sclerosis complex and the potential effects on diagnosis and care.
Ashley J Pounders, Gabrielle V Rushing, Sonal Mahida...
https://pubmed.ncbi.nlm.nih.gov/37180419Actively Recruiting
All Genders
ID05676099
TSC Alliance Tuberous Sclerosis Complex Biosample Repository and Natural History Database
Led by National Tuberous Sclerosis Association · Updated on 2026-05-29
5000
Participants Needed
26
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Researchers are gathering blood, DNA, and tissue samples from people with tuberous sclerosis complex (TSC) and lymphangioleiomyomatosis (LAM) to support scientific research. This project links these biosamples with detailed clinical data stored in the TSC Natural History Database, which tracks how these diseases affect health over a lifetime. The study is observational and sponsored by the TSC Alliance to help find new treatments for conditions affecting organs like the brain, kidney, heart, lungs, and skin. Participants may provide samples at various locations such as specialized TSC clinics, their homes, educational meetings, or other approved clinical sites. Blood samples, cheek swabs, genetic testing, and tissue donations following routine medical procedures are collected. The samples are sent to the Van Andel Institute Biorepository for processing, storage, and distribution to approved researchers. Genetic testing may be done on samples, and participants can choose to receive their genetic results with free counseling. Throughout the study, participants' clinical data and biosamples are collected both retrospectively and prospectively to create a comprehensive longitudinal record. Researchers monitor the natural history of TSC and LAM, with biosample storage averaging about 15 years. The study involves ongoing collection and sharing of data and samples to support future research, with no age or gender restrictions and participation lasting across the lifespan of individuals diagnosed with these conditions.
CONDITIONS
Brief Title
TSC Biosample Repository and Natural History Database
Who Can Participate
All Genders
Eligibility Criteria
You may qualify if you...
- Diagnosis of tuberous sclerosis complex or lymphangioleiomyomatosis (sporadic LAM)
You will not qualify if you...
- None specified or no exclusion criteria listed in the source document
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
1
2
3
Your Study Journey
Screening
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
Sample Collection
Duration - Ongoing throughout participant involvement
Participants may provide blood samples, buccal swabs, or tissue samples collected after routine clinical procedures to the Biosample Repository.
1 or more visits depending on sample collection opportunities
Long-term Monitoring
Duration - Average 15 years
Participants' clinical data and biosamples are collected and stored over time to support longitudinal research on tuberous sclerosis complex and lymphangioleiomyomatosis.
Visits may occur at clinical study sites, participants' homes, educational meetings, or other approved locations
Trial Site Locations
Total: 26 locations
1
University of Alabama Birmingham
Birmingham, Alabama, United States
Actively Recruiting
2
Loma Linda University Children's Hospital
Loma Linda, California, United States
Actively Recruiting
3
University of California Los Angeles
Los Angeles, California, United States, 90095
Actively Recruiting
4
Jack & Julia Center for TSC, Oakland Children's Hospital and Research Center
Oakland, California, United States
Completed
5
The Children's Hospital
Denver, Colorado, United States
Actively Recruiting
6
Nicklaus Children's Hospital
Miami, Florida, United States
Actively Recruiting
7
Chicago Comer Children's Hospital Neurogenetic Clinic, University of Chicago
Chicago, Illinois, United States
Actively Recruiting
8
University of Iowa Hospitals and Clinics
Iowa City, Iowa, United States
Actively Recruiting
9
TSC Alliance
Silver Spring, Maryland, United States, 20910
Actively Recruiting
10
Boston Children's Hospital
Boston, Massachusetts, United States
Actively Recruiting
11
Massachusetts General Hospital
Boston, Massachusetts, United States
Actively Recruiting
12
Minnesota Epilepsy Group
Roseville, Minnesota, United States
Actively Recruiting
13
Children's Mercy Research Institute
Kansas City, Missouri, United States, 64108
Actively Recruiting
14
Washington University in St. Louis
St Louis, Missouri, United States, 63110
Actively Recruiting
15
New York University Medical Center
New York, New York, United States
Actively Recruiting
16
University of Rochester Medical Center
Rochester, New York, United States, 14642
Actively Recruiting
17
Cincinnati Children's Hospital Medical Center
Cincinnati, Ohio, United States
Actively Recruiting
18
Cleveland Clinic Foundation
Cleveland, Ohio, United States
Actively Recruiting
19
University of Pennsylvania Medical Center
Philadelphia, Pennsylvania, United States
Actively Recruiting
20
Le Bonheur Children's Hospital
Memphis, Tennessee, United States
Actively Recruiting
21
Scottish Rite Hospital for Children
Dallas, Texas, United States
Actively Recruiting
22
Texas Childrens Hospital Baylor College of Medicine
Houston, Texas, United States, 77030
Actively Recruiting
23
Memorial Hermann-Texas Medical Center (University of Texas Houston)
Houston, Texas, United States
Actively Recruiting
24
Children's National Medical Center
Fairfax, Virginia, United States
Actively Recruiting
25
Centre Hospitalier de l'Université de Montréal
Montreal, Canada
Actively Recruiting
26
Sainte-Justine Université de Montréal
Montreal, Canada
Actively Recruiting
Loading map...
Research Team
E
Elizabeth Cassidy, MPH
A
Ayat Abi
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
Similar Trials
Frequently Asked Questions
Have more questions? Get in touch with our team for quick support
Not the Right Trial for You?
Explore thousands of other clinical trials that might be a better match.
Sign up to get personalized trial recommendations delivered to your inbox.
Already have an account? Log in here
Published Research Related To This Trial
Circulating biomarkers of kidney angiomyolipoma and cysts in tuberous sclerosis complex patients.
Varvara I Rubtsova, Yujin Chun, Joohwan Kim...
https://pubmed.ncbi.nlm.nih.gov/39027368Mortality in tuberous sclerosis complex.
Shridhar Parthasarathy, Rajeshwari Mahalingam, Jackie Melchiorre...
https://pubmed.ncbi.nlm.nih.gov/34087679Effect of Gene Mutation on Seizures in Surgery for Tuberous Sclerosis Complex.
Srinivas Chivukula, Omeed Modiri, Alon Kashanian...
https://pubmed.ncbi.nlm.nih.gov/32854808Epilepsy and Neurodevelopmental Comorbidities in Tuberous Sclerosis Complex: A Natural History Study.
Ajay Gupta, Gwendolyn de Bruyn, Simon Tousseyn...
https://pubmed.ncbi.nlm.nih.gov/32139167Epilepsy treatment patterns among patients with tuberous sclerosis complex.
Jinlin Song, Elyse Swallow, Qayyim Said...
https://pubmed.ncbi.nlm.nih.gov/30103955Predictors of Drug-Resistant Epilepsy in Tuberous Sclerosis Complex.
Anna Jeong, Jo Anne Nakagawa, Michael Wong
https://pubmed.ncbi.nlm.nih.gov/29129154Systemic disease manifestations associated with epilepsy in tuberous sclerosis complex.
Anna Jeong, Michael Wong
https://pubmed.ncbi.nlm.nih.gov/27417921Genotype/phenotype in tuberous sclerosis complex: associations with clinical and radiologic manifestations.
Sanjeev V Kothare, Kanwaljit Singh, Tsivia Hochman...
https://pubmed.ncbi.nlm.nih.gov/24754401Severity of manifestations in tuberous sclerosis complex in relation to genotype.
Sanjeev V Kothare, Kanwaljit Singh, Jason R Chalifoux...
https://pubmed.ncbi.nlm.nih.gov/24917535