Biosample Repository for Tuberous Sclerosis Complex
What You Need to Know Before You Apply
What is the purpose of this trial?
This trial collects blood, DNA, and tissue samples from individuals with tuberous sclerosis complex (TSC) or sporadic lymphangioleiomyomatosis (LAM). The goal is to create a repository that aids researchers in studying how these conditions affect health over a lifetime. Participants' samples link to a database that tracks their health history to understand the long-term impact of these diseases. Individuals diagnosed with TSC or LAM might be suitable candidates. As an unphased study, this trial offers participants the chance to contribute to valuable research that could enhance understanding and treatment of these conditions.
Do I need to stop my current medications for this trial?
The trial information does not specify whether you need to stop taking your current medications.
Why are researchers excited about this trial?
Researchers are excited about the TSC Biosample Repository and Natural History Database because it offers a unique approach to understanding tuberous sclerosis complex (TSC). Unlike traditional treatments that focus solely on managing symptoms, this initiative collects detailed biosamples and clinical data to map out the natural history of TSC over time. This comprehensive database could lead to breakthroughs in personalized medicine, helping doctors predict how the disease might progress in individual patients and tailor treatments accordingly. By creating a more complete picture of TSC, this project has the potential to drive the development of more effective therapies in the future.
Who Is on the Research Team?
Steve Roberds, PhD
Principal Investigator
TSC Alliance
Are You a Good Fit for This Trial?
Inclusion Criteria
Timeline for a Trial Participant
Screening
Participants are screened for eligibility to participate in the trial
Biosample Collection
Collection of blood, tissues, and cells from individuals with TSC at various locations including clinical study sites, participant's homes, or educational meetings
Data Collection
Collection of retrospective and prospective clinical data on individuals with TSC over their lifespan
Follow-up
Participants are monitored for the impact of TSC on their health over their lifetime
What Are the Treatments Tested in This Trial?
Interventions
- TSC Biosample Repository
- TSC Natural History Database
Find a Clinic Near You
Who Is Running the Clinical Trial?
National Tuberous Sclerosis Association
Lead Sponsor