07/14/2026
Chondrosarcoma Foundation Initiates a Voluntary Tissue Donation Biobank with the Fred Hutchinson Cancer Center
The Chondrosarcoma Foundation is joining forces with the Fred Hutchinson Cancer Center in Seattle, WA to build a biobank with genomic and transcriptional data. The overall objective of this project is to establish a comprehensive bioresource platform for chondrosarcoma that integrates multi-omics profiling, biospecimen banking, preclinical model development, and open data sharing.
The project is supported by grants from Inhibrx, Servier, Valius Sciences and a benevolent donation for Alex Croson, a 16-year-old from Orlando, Florida who passed away on June 1 from Mesenchymal Chondrosarcoma. Alex wanted money raised from his sponsored Auto Show to be dedicated to chondrosarcoma research. In response, the biobank will be dedicated to his memory.
This project will create a centralized resource of tumor samples, molecular data, and laboratory models for chondrosarcoma research. By generating a high-quality, well-annotated dataset and enabling open and accessible data sharing, this resource will accelerate biological discovery and deepen our understanding of disease mechanisms. It will facilitate the identification of novel therapeutic targets and support the development and testing of new treatment strategies. In addition, by providing a centralized and collaborative platform, this effort will strengthen research partnerships across institutions and disciplines. Ultimately, we expect these advances to translate into improved therapeutic options and better clinical outcomes for patients with chondrosarcoma.
To facilitate the data sharing, a web-based data portal will be developed to facilitate the dissemination of multi-omics data, biospecimens, and preclinical models. This platform will integrate clinical, molecular, and histologic data into an interactive and user-friendly interface that enables data exploration, visualization, and downloads.
We anticipate approximately 50 participants in the study for the first pass. This study has no anticipated end date for recruitment. Patient’s participation will consist only of reviewing and signing this consent form from the Fred Hutchinson Cancer Center.
Enrollment of Tissue Samples from Patients / Caregivers:
The efforts to obtain tissue samples will come from patients who have undergone surgery and a biopsy and have fresh or stored chondrosarcoma tissue. Recruitment efforts to donate the tissue will be made to participants enrolled in the Chondrosarcoma Patient Registry and to diagnosed patients with chondrosarcoma undergoing treatment in Sarcoma Centers. Only tissue remaining after all clinical diagnostic and treatment needs have been completed will be collected for research purposes.
Eligibility
Any Patient that has been diagnosed with chondrosarcoma, an ultra-rare bone cancer by a pathologist from a tissue biopsy.
Procedure
We are looking for fresh tissue from a recent biopsy or surgery or stored frozen tissue from a past biopsy or surgery. We will collect leftover tissue from patient’s surgery or biopsy after their doctor and pathologist have taken all the material needed for patient’s medical care. No additional procedures will be performed for research purposes.
Clinical information such as diagnosis, age, s*x, and general treatment history which you recorded in the Chondrosarcoma Patient Registry be matched to your donated tissue sample in our research database. All specimens and data will be labeled with a unique ID number. Your name, personal information or other identifiers will not be used.
No additional procedures or interventions will be performed. Strict measures are in place to protect patient privacy. All samples and data will be coded and stored securely; identifying information will not be shared with anyone outside the research team.
To enroll:
1. Go to: https://csfshayna.org/CS-Biobank/
2. Complete and Submit the Short On-line Application
3. You will be e-mailed a link to an on-line Informed Consent Form from the Fred Hutchinson Cancer Center
4. Complete, Docusign and submit the form as instructed.
That is all patients need to do to participate. Staff from the Fred Hutchinson Cancer Center will send a kit to the Treatment Center you indicate to collect their tissue.
