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Two Big Steps Forward in Tissue Resources for NF Research

By May 17, 2013December 18th, 2023Science & Research

Today, on World NF Awareness Day, CTF is proud to announce two exciting advances toward building “tissue libraries” for NF research. Both will be multipurpose, openly available resources to help researchers move ahead more quickly in their work.

The CTF Biobank has just been approved by an Institutional Review Board, and will begin banking one kind of NF tissue this summer. The initial project will be limited to collecting dermal neurofibromas from one healthcare facility. In about 10 to 12 months, CTF will invite researchers to request these biobank samples for their studies. In the future, the Foundation will invite tissue donation from many other sources.

CTF is also excited to report that a National Institutes of Health program called The Cancer Genome Atlas (TCGA) is ready to accept samples of malignant peripheral nerve sheath tumors (MPNST), which can develop in NF1, for comprehensive analysis. This effort is part of TCGA’s goal of completely characterizing 10,000 cancer samples by 2014. CTF was a key player in TCGA’s decision to include MPNSTs in this project. If you have access to MPNST samples and want to help TCGA, please email

The Foundation will share more information in greater detail about both the MPNST project and the tissue Biobank in the coming weeks.