Having entered its second year, the TSC Biosample Repository is beginning to receive serial blood samples from individuals who donated one year ago. Although we have only three such serial samples today, we will continue to collect additional samples annually from more participants. These serial samples will be valuable for studies looking at changes in components of plasma over time in individuals with varying manifestations of TSC. This will hopefully lead to clinically useful biomarkers (e.g. markers of risk for various manifestations or response to treatment).

The Biosample Repository has more than 230 samples from participants enrolled in the Natural History Database project. The Repository also includes blood samples from children and many of their parents collected by the TSC Clinical Research Consortium through the Developmental Synaptopathies Consortium and the PREVeNT trial.

High-quality biospecimens 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.

Future samples may also include brain, kidney, pancreas, skin, lung, and cell lines derived from fresh TSC tissue samples. The Van Andel Research Institute processes, stores, and delivers TSC Biosample Repository samples on behalf of the TSC Alliance.

If you are interested in using our samples for research, please contact Jo Anne Nakagawa. All biosample requests will be reviewed by the Biosample Use Committee, a group of external experts on TSC.