Individuals & Families

Biosample Repository

The TSC Biosample Repository stores samples of blood, DNA, and tissues scientists can use in their research. The samples we collect are all linked to clinical data in the TSC Natural History Database. These samples and data about individuals who provided samples help researchers discover biomarkers of TSC, test potential drug treatments, and determine why TSC is so different from person to person.

The TSC Biosample Repository is collecting samples from TSC Natural History Database participants at specific clinics. In addition, all individuals with TSC interested in donating tissue samples to research should see the “All Individuals with TSC” section below for more information about other biosample projects.

Participants in the TSC Natural History Database

Blood and Buccal Samples

Currently, we are accepting blood and buccal samples from volunteers enrolled in the TSC Natural History Database at the following sites:

  • Texas Scottish Rite Hospital for Children (Dallas, TX)
  • Nicklaus Children’s Hospital (Miami, FL)
  • Cincinnati Children’s Hospital Medical Center (Cincinnati, OH)
  • Minnesota Epilepsy Group (St. Paul, MN)
  • Massachusetts General Hospital (Boston, MA)
  • UCLA Medical Center (Los Angeles, CA)

In the near future, we will also be collecting samples from volunteers enrolled in the TSC Natural History Database at these additional sites:

  • UCSF Benioff Children’s Hospital (Oakland, CA)
  • Cleveland Clinic (Cleveland, OH)
  • Washington University in St. Louis (St. Louis, MO)

Individuals with TSC seen at one of the participating institutions may ask their health care provider or clinic coordinator about participating in the TSC Natural History Database and Biosample Repository.

Brain Tissue Samples

Individuals enrolled in the TSC Natural History Database should contact Jo Anne Nakagawa about donating brain tissue from epilepsy surgeries. Please notify her with as much advance notice as possible so we can ensure the biosample will be processed in a way that makes it useful for researchers in the future.

All Individuals with TSC

Lung and Kidney Samples

Any individuals with TSC who wish to donate tissue samples from kidney or lung surgery should contact Dr. Elizabeth (Lisa) Henske’s laboratory with as much advance notice as possible.

Post-Mortem Brain Donation

Individuals living anywhere in the United States who wish to donate whole brain tissue to the TSC Biosample Repository after death should contact the University of Maryland Brain and Tissue Bank (UMB BTB). The Brain and Tissue Bank makes arrangements for this type of precious gift on behalf of the TS Alliance.

Successful donation rests on swift and thorough communication between family members, healthcare professionals, and the Brain and Tissue Bank. Although the Brain and Tissue Bank will make every effort to retrieve tissue in an emergency, tissue recovery may be impossible if there is no advance notice. Please see here for instructions on how to register in advance for postmortem donation. If death or surgery is imminent and you would like to donate brain tissue, please call the Brain and Tissue Bank as soon as possible at 1-800-847-1539.

For Researchers

If you are a researcher interested in using samples from the TSC Biosample Repository in your work, please see here for more information.

Acknowledgements

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, Jim and Andrea Maginn, and many additional donors through the Unlock the Cure campaign.