The CTF Biobank is a centralized, open-access repository where patient tissue (such as blood and tumor samples) and matched clinical data is stored for future research use. The CTF Biobank is essential because there is not currently enough high-quality NF tissue available to all researchers interested in NF. The CTF Biobank is a top quality “library” of openly available NF tissue donated by people with any form of NF. Having this tissue provides our partners, Sage Bionetworks and HudsonAlpha Genomic Services, with the ability to conduct in-depth analyses and characterizations. In 2015 alone, at least 50 dermal neurofibromas were analyzed, and this number will only continue to grow as we expand our ability to accept surgical donations of other types of NF tumors.
The CTF Biobank also enables the donation of post-mortem tissue, from individuals affected by NF1, NF2, or schwannomatosis. This is made possible through CTF’s partnership with the National Disease Research Interchange (NDRI) and its Rare Disease Partnership program, a nonprofit organization dedicated to providing the highest quality human biomaterials for research.