The TSC Biosample Repository houses human biological materials such as blood, DNA, and tissues linked to detailed clinical data in the TSC Natural History Database. High-quality biosamples and their associated clinical data will enable researchers to discover biomarkers, establish human cell lines or tissue arrays for drug testing, and search for clues to understand why TSC is so different from person to person.
Types of samples available include:
- DNA isolated from white blood cells
- White blood cell pellets
We expect to collect brain tissue from epilepsy surgeries (frozen or fixed, paraffin-embedded) by the end of 2017. Future samples may also include kidney, pancreas, skin, lung, and cell lines derived from fresh TSC tissue samples. The Van Andel Research Institute in Grand Rapids, MI processes, stores, and delivers TSC Biosample Repository samples on behalf of the TS Alliance.
Please see this slide deck for an overview of the phenotypic characteristics of TSC Biosample Repository participants.
How to Request Samples
Please contact Jo Anne Nakagawa with inquiries about using the samples for research. All biosample requests will be reviewed by the Biosample Use Committee, a group of external experts on TSC.
The TS Alliance is eager to partner with sponsors of clinical trials or clinical research studies to collect biosamples centrally at the TSC Biosample Repository. Such biosamples will remain under the control of the study’s biosample use committee until the conclusion of the project, at which time the samples will become part of the openly available TSC Biosample Repository. This provides a win-win opportunity to ensure the long-term availability of valuable samples. This process is being used with the Developmental Synaptopathies Consortium and the PREVeNT clinical trial.
Information for Individuals with TSC and Their Families
If you are an individual with TSC or a family member of someone with TSC, please see here for information about donating samples to the TSC Biosample Repository.
The TSC Biosample Repository is governed and wholly funded by the TS Alliance thanks to generous support from Bill and Kristina Watts, the Cowlin Family Fund, The Engles Collaborative Research Fund, Jim and Andrea Maginn, and many additional donors through the Unlock the Cure campaign.