TSC Alliance Biosample Repository and Natural History Database for Tuberous Sclerosis Complex and Lymphangioleiomyomatosis

What this Trial Is About

Researchers are collecting and storing blood, DNA, and tissue samples from individuals diagnosed with tuberous sclerosis complex TSC or lymphangioleiomyomatosis LAM to support scientific research. These samples are linked to detailed clinical data that tracks the health impact of TSC over a persons lifetime, gathered both retrospectively and prospectively. This project aims to improve understanding of TSC and related conditions affecting various organs such as the brain, kidney, heart, lungs, and skin. Participants may provide biosamples through various methods, including blood draws, cheek swabs, genetic testing, or tissue donations following routine medical procedures. Samples can be collected at clinical study sites, participants homes, educational meetings, or through approved clinical partners using supplied kits and instructions. All collected samples are sent to a central biobank for processing, storage, and distribution to researchers after appropriate approvals. During participation, individuals contribute their samples and clinical information, which is stored in the TSC Natural History Database. Researchers monitor genetic variants through sequencing and may offer participants genetic counseling if they opt to receive their results. The project involves ongoing collection and sharing of biosamples and data, with an average follow-up of 15 years to study the natural history of TSC and LAM.

TSC Biosample Repository and Natural History Database