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Synovial Sarcoma Registry / Biospecimen Repository Resources
The Synovial Sarcoma Registry and Biospecimen Repository started with a patient named Callan, who was diagnosed with synovial sarcoma in January 2022. Learn more about the project's beginning and Callan's journey.
For Patients and Caregivers
Synovial Sarcoma is a rare cancer that can come from soft tissue. It most commonly forms in the arms, legs, or chest.
Synovial sarcoma is diagnosed through a biopsy, where a sample of the tumor is tested. Doctors assess the tumor under the microscope to classify it as synovial sarcoma. In addition, genetic testing is often performed. Synovial sarcoma manifests as a specific genetic change in the tumor cells that can help confirm the diagnosis. Two genes, known as SYT and SSX, are joined in error, which causes the tumor to form and grow. Unlike genes for eye color or hair color, the genetic changes that cause synovial sarcoma are not usually passed down in families.
Treatment depends on the size and location of the tumor, and whether it has spread to other parts of the body.
Treatment usually includes surgery to remove the tumor.
Radiation therapy may be used before and after surgery to kill cancer cells, or in some cases when surgery cannot be performed.
Chemotherapy is recommended for some patients with larger tumors or tumors that have spread. The combination of drugs known as AIM (Adriamycin+ Ifosfamide + Mesna) is a common chemotherapy option.
Additional treatment options for tumors that have come back or not responded to AIM include kinase inhibitors such as pazopanib, other chemotherapies, or enrollment in clinical trials.
Complete a REDCap Survey to express interest in the Synovial Sarcoma Registry and Biospecimen Repository and a member of the study team will contact you.
Interested participants can also enroll using our online consent form.
The Very Rare Malignant Tumors Program at Children's Hospital of Philadelphia and Theodore Laetsch, MD, host a Monthly Synovial Sarcoma Tumor Board for medical personnel. Patients and their family members are not permitted to attend but can share this informational flyer with their care team.
Canadian Patients: The Canadian Sarcoma Clinical and Research Collaboration (CanSaRCC) is a registry in which patients with synovial sarcoma in Canada can participate.
For Clinicians
The Very Rare Malignant Tumors Program at Children's Hospital of Philadelphia and Theodore Laetsch, MD, host a monthly Synovial Sarcoma Tumor Board. This board is open to medical personnel worldwide who are providing care for patients with synovial sarcoma.
Contact Lauren Gutstein, project manager, to request to be added to the email list and calendar invitation.
(Please note that patients and families are not able to join this medical discussion.)
Anyone residing or treated in the United States can participate in the Synovial Sarcoma Registry and Biospecimen Repository. Please feel free to share the recruitment flyer or REDCap Survey link with any patient with a Synovial Sarcoma diagnosis.
For Researchers/Potential Collaborators
We envision this data and biospecimen repository as a resource for the cancer research community. If you have a project and would like to discuss collaboration and/or the use of data and biospecimens, please reach out to Lauren Gutstein at [email protected].