Biosample Repository and Natural History Database

The TSC Natural History Database collects clinical data used to document the impact of TSC on a person’s health, over his or her lifetime.  The TSC Biosample Repository collects and stores the biosamples from individuals who have volunteered to participate, and is linked to the clinical data in the TSC Natural History Database.  The biosamples and associated clinical data are available to researchers which enables advances in TSC research.

Through TSC Canada’s Global Alliance Partnership with the TSC Alliance, a research grant was provided to help launch the first international Natural History Database and Biosample Repository site outside of the United States.  The Canadian TSC Biosample Repository sites are located at:

  • Université de Montréal Sainte-Justine, Montreal, Canada (Philippe Major, MD)
  • Université de Montréal, Montreal, Canada (Mark Keezer, BA, BSc, MSc, MDCM, PhD)

Learn more

To learn more, visit the Biosample Repository and Natural History Database webpage and fill out the Biosample Repository Project Interest Form.  For patients of the Montreal TSC Clinics, please talk to your health care provider or clinic coordinator about your interest in the TSC Natural History Database and TSC Biosample Repository.

Brain and Tissue Bank Helps Further Research

The Brain and Tissue Bank for Developmental Disorders at the University of Maryland in Baltimore is a tissue resource established to further research aimed at improving the understanding, care and treatment of developmental disorders such as Tuberous Sclerosis.

The Brain and Tissue Bank is funded by the National Institute of Child Health and Human Development to serve as an intermediary for people in the U.S. and Canada who wish to have tissue donated for research upon the time of their death or surgery.

Please take the time to consider the possibilities offered to humanity through the great gift of tissue donation.

Become a Registered Donor

If you are interested in becoming a registered donor, or if you have any questions or concerns regarding the donation process, please contact MBTB at btbumab@som.umaryland.edu. If death is imminent and you would like to donate brain tissue, please call the MBTB as soon as possible at 1-800-847-1539.

Successful donation rests on swift and thorough communication between family members, healthcare professionals, and the MBTB. Although the MBTB will make every effort to retrieve tissue in an emergency, tissue recovery may be impossible if there is no advance notice.  Please click here for instructions on how to register in advance for postmortem donation. There is no cost to the family to donate.