Do you have chordoma?
The Chordoma Foundation Biobank collects and distributes biospecimens needed to advance chordoma research.
Chordoma tissue is critical for research, but scientists have struggled to find the samples needed to learn what drives chordoma and how it might be treated. The Chordoma Foundation Biobank is solving this problem by collecting samples from patients in the United States and providing the first centralized source of chordoma samples and data to the research community. Our goal is to create a collection of chordoma tissue large enough to enable adequately-sized studies and meet the needs of researchers interested in studying chordoma.
The Chordoma Foundation operates the Biobank under an institutional review board (IRB) approved research protocol. Specimens are stored and processed through a partnership at The Children’s Hospital of Philadelphia (CHOP). Our Biobank team works closely with hospitals across the United States to coordinate tissue collection. Standardized kits make it easy for any hospital in the United States to provide tissue samples.
Distribution of Biobank samples for research
Chordoma biospecimens of varying types with associated clinical data are available to researchers worldwide. To request samples and/or clinical data please complete the Chordoma Foundation Biobank Sample Request Form which includes information on our review process and timeline for release of samples.
To maximize the use of the samples in multiple research studies by different labs, the Biorepository staff at CHOP will perform DNA and RNA extractions from tumor and normal tissues. In certain cases, aliquots of tumor tissue may be provided to researchers following proper justification and approval by the Chordoma Foundation.
The type of biospecimens and clinical data collected by the Chordoma Foundation Biobank are summarized in the following charts and tables:
Biobank totals and metrics
- Number of subjects with clinical data: 274
- Number of subjects with specimens: 189
- Number of subjects with tumor and tumor-normal: 25
Additional chordoma resources available
The Children’s Brain Tumor Tissue Consortium (CBTTC) has additional pediatric chordoma biospecimens and raw sequencing data available for request. In order to review and request samples, please visit cbttc.org/research/specimendata/.
The University of Pennsylvania has additional chordoma biospecimens available for request. In order to review and request samples, please visit eig.research.chop.edu/upnttb.
The following hospitals have partnered with the Chordoma Foundation to routinely contribute chordoma tissue to the Biobank. We appreciate the cooperation and dedication of the surgeons, pathologists, and staff at these hospitals whose efforts ensure that precious chordoma tissue gets saved and used for research.
- Barrow Neurological Institute / St. Joseph’s Hospital
- University of California San Francisco
- University of North Carolina at Chapel Hill
- University of Pittsburgh Medical Center
- Memorial Sloan Kettering Cancer Center
- University of Michigan Medical School