Individuals & Families

Biosample Repository

Purpose

The TSC Biosample Repository houses biosamples 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
  • Plasma
  • White blood cell pellets
  • Brain tissue from epilepsy surgeries (frozen or fixed, paraffin-embedded) — Pending

Future samples may include kidney, pancreas, skin, lung, and cell lines derived from fresh TSC tissue samples.

How to Request Samples

Contact Jo Anne Nakagawa at jnakagawa@tsalliance.org or Steve Roberds at sroberds@tsalliance.org.  You may also call them at 301.562.9890.

How to Donate Samples

All samples are collected at selected TSC Clinics from volunteers enrolled in the TSC Natural History Database. The list of currently participating clinics will be kept updated under “Participating Institutions” below. 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.

Individuals who are undergoing lung transplant due to LAM or surgery due to angiomyolipomas of the kidney should please contact Dr. Elizabeth (Lisa) Henske with as much advance notice as possible at 857.307.0782 (www.henskelab.org).

We are still developing processes and procedures for acceptance of post-mortem tissues by the TSC Biosample Repository. The University of Maryland Brain and Tissue Bank (UMD BTB) will arrange for this type of precious human tissue donation from all interested individuals who reside in the USA or Canada.

Step 1:  Register Online

(please use Microsoft Internet Explorer) at somvweb.som.umaryland.edu or complete the paper registration form.

IF DEATH OR SURGERY IS IMMINENT, PLEASE CALL 1-800-847-1539 INSTEAD OF FILLING OUT THE ONLINE APPLICATION.

If you complete the paper registration form, return it by fax at (410) 706-0020 or mail it to:

University of Maryland Brain and Tissue Bank
University of Maryland School of Medicine
Department of Pediatrics
655 W. Baltimore Street, 13-013 BRB
Baltimore, MD 21201-1559

If you have any questions about the registration process, call 1-800-847-1539 or 410-706-1755, or send email to btbumab@umaryland.edu.

Step 2: Inform Family Members and Physician of Your Decision to Donate

This is extremely important since the next of kin must give final permission for tissue recovery, even if a donor has registered in advance.

Step 3:  Complete Anatomical Gift Act Forms and Access to Medical Records Forms

You will receive these forms by mail together with additional materials after we receive your registration form. Please complete these forms and return them by mail to the Brain and Tissue Bank. We need to have the original of these forms with your signature. YOUR REGISTRATION IS NOT COMPLETE UNTIL WE RECEIVE THE SIGNED CONSENT FORMS.

The successful donation rests on swift and thorough communication between many professionals and family members. Although the Brain and Tissue Bank will make every effort to retrieve tissue in an emergency, if we have no advance notice, tissue recovery may be impossible.  You may call the Brain and Tissue Bank from anywhere in the continental United States to address any questions or concerns.

Participating Institutions

  • The Van Andel Research Institute in Grand Rapids, Michigan, provides collection kits and processes, stores, and delivers TSC Biosample Repository samples on behalf of the TS Alliance.
  • Texas Scottish Rite Hospital for Children, Dallas, TX
  • Nicklaus Children’s Hospital, Miami, FL
  • Minnesota Epilepsy Group, P.A., St. Paul, MN
  • Massachusetts General Hospital, Boston, MA (Pending)
  • UCLA Medical Center, Los Angeles, CA (Pending)

Partnering Opportunities

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.

Acknowledgements

The TSC Biosample Repository is owned 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.