Research Programs
Registry
Join our registry to help advance research and improve outcomes for both children and adults.
Launched in 2023, the Synovial Sarcoma Registry and Biospecimen Repository is funded by the Synovial Sarcoma Foundation and housed at Children’s Hospital of Philadelphia (CHOP). In partnership with Penn Medicine, this first-of-its-kind initiative is dedicated exclusively to synovial sarcoma, serving as a centralized resource to advance research and improve outcomes for both children and adults.
The Registry collects and consolidates clinical data, treatment details, imaging, genomic information, and biospecimens from consenting patients across the U.S. This comprehensive dataset provides researchers and clinicians with critical insights into how synovial sarcoma develops, progresses, and responds to treatment. Broad participation is essential to driving groundbreaking discoveries and accelerating the development of new therapies.
This study is open to anyone treated in the United States—travel to Philadelphia is NOT required.
Register: Complete the secure registration form: https://redcap.link/synovialregistryconsent
More Information: https://www.research.chop.edu/synovial-sarcoma-registry-biospecimen-repository
Email: synovialsarcomaregistry@chop.edu
Phone: 267-827-8145
All coordination and sample collections are managed by the study team at no cost to patients. Participation is voluntary and will not affect medical care at CHOP, Penn Medicine or any other institution. You may withdraw at any time.
- Provide data on your cancer treatment and agree to let the study team review your health records. The team will request records from your medical providers.
- Submit saliva and/or buccal (cheek) swab sample for analysis.
- Provide blood sample which will be collected during a routine clinical draw.
- Agree to have leftover tumor tissue stored in a repository at CHOP—a small sample (not the entire tumor) will be requested for research.
- Have genetic testing done on your provided biospecimens.
New clinical trials: Ongoing studies, including TCR therapies and epigenetic inhibitors, aim to provide improved treatment options, particularly for patients with advanced or relapsed disease.
Expanding research collaborations: Through partnerships with Penn Medicine and other leading institutions, CHOP researchers are working to accelerate the development of breakthrough therapies.
A focus on both pediatric & adult care: The goal is to develop effective therapies for patients of all ages, ensuring that children, adolescents, and adults benefit from the latest advancements in synovial sarcoma treatment.