See below for ongoing studies.

The TSC Alliance is seeking volunteers for the “Tuberous Sclerosis Complex Biosample Repository”

The purpose of this research project is to collect a sample of blood, tissue, fluid or other types of bodily samples from children and adults with tuberous sclerosis complex (TSC).   These samples and medical information about how this genetic disorder affects you will be made available to TSC researchers to better understand TSC and hopefully other diseases such as epilepsy or autism.

Participation of you or your child in this project is voluntary. There is no immediate benefit to volunteers.

For more information about this project contact Jo Anne Nakagawa at jnakagawa@tscalliance.org or (240) 638-4654.

Researcher Seeking Donation of Tissue Samples from Your Surgery

Dr. Elizabeth (Lisa) Henske’s laboratory has a new project to develop cellular models of LAM and angiomyolipomas to catalyze translational research. Please contact us if you are considering lung transplantation or any type of surgery. We are actively seeking tissue specimens from LAM, angiomyolipomas, lung transplantation, chylous fluid, uterine fibroids or tumors, or any other tissue or specimen from individuals with LAM or TSC. Please provide as much advance notice as possible so that the tissue can be properly collected. Please contact Lisa Henske at EHenske@BWH.Harvard.edu or 857-307-0782 if you are considering any type of surgery or biopsy.

Dr. David Kwiatkowski at the Brigham & Women’s Hospital in Boston Seeks Biospecimens for LAM/TSC Research

His research involves analyzing left over fluid and tissue samples from chest and abdominal drains and surgery. After the fluid or tissue is removed and processed by your hospital, he will use it to try to grow LAM/TSC cells in order to better understand the disease.  There will be no additional medical tests for you and no cost to participate. If you are willing to donate such specimens, he would like to have the samples collected and sent to his lab through the NDRI Private Donor Program. The NDRI is a nonprofit organization funded by the NIH which facilitates the transfer of these precious biospecimens to a number of labs for these kinds of studies. Please contact the NDRI at 800-222-6374 or privatedonorprogram@ndriresource.org.  It is helpful to register as a donor well in advance of any procedures.  Thank you for your participation.