COVID-19 Update: Currently, biosample collections have been paused. However, you can still participate in this initiative. The TS Alliance is able to consent you for the project via a 20-minute phone call such that when biosample collection is available, we can proceed smoothly and quickly. To schedule your consent phone call, please click here or email firstname.lastname@example.org.
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. The TS Alliance hopes to collect blood samples from participants once per year.
Participants in the TSC Natural History Database
Currently, we are accepting blood samples from volunteers enrolled in the TSC Natural History Database at the following sites:
- Minnesota Epilepsy Group, PA, St. Paul, MN (Michael D. Frost, MD)
- Texas Scottish Rite Hospital for Children, Dallas, TX (Steven P Sparagana, MD)
- New York University Langone Medical Center, New York, NY (Orrin Devinsky, MD)
- Massachusetts General Hospital, Boston, MA (Elizabeth A. Thiele, MD, PhD)
- University of Chicago, Chicago, IL (James Tonsgard, MD)
- University of California Los Angeles (UCLA), Los Angeles, CA (Joyce Y. Wu, MD)
- University of Texas Health Science Center, Houston, TX (Hope Northrup, MD)
- University of Alabama, Birmingham, AL (Martina Bebin, MD, MPA)
- Nicklaus Children’s Hospital, Miami, FL (Ian O’Neil Miller, MD)
- Boston Children’s Hospital, Boston, MA (Mustafa Sahin, MD, PhD)
- Cincinnati Children’s Hospital Medical Center, Cincinnati, OH (Darcy A. Krueger, MD, PhD)
- Washington University, St. Louis, MO (Michael Wong, MD, PhD)
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.
If an individual enrolled in the TSC Natural History Database is having a surgery at an institution with a TSC Clinic, he or she should ask the Clinic Director and the Coordinator about donating tissue from the surgery. Please notify them 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
In coordination with a national mobile phlebotomy service the TS Alliance can collect blood samples from anyone in the United States with TSC. To learn more on how to donate contact us at email@example.com or (240) 648-4654.
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.
If you are a researcher interested in using samples from the TSC Biosample Repository in your work, please see here for more information.
The TSC Biosample Repository is governed and wholly funded by the TS Alliance thanks to generous support from Lorne and Heidi Waxlax, Bill and Kristina Watts, the Cowlin Family Fund, Jim and Andrea Maginn, and many additional donors through the Unlock the Cure campaign.