The International Sarcoma Registry currently has two active projects that all ISOLS members are encouraged to join.
The first is the “Global Variability” project.
We are looking at international differences in three key aspects of sarcoma presentation: tumor size, metastasis at diagnosis, and incomplete excisions prior to referral. The data are simple to record and submit; all the necessary elements are part of the minimal dataset.
The results of this study will provide insight into regional differences in referral patterns and access to specialized sarcoma care. More importantly, this project is proof of concept for future international collaboration. Over 250 sarcoma specialists (most were orthopaedic oncologists and ISOLS members) were interested in joining a collaborative study using the registry.
To date, only 33 have contributed data to this project. We encourage everyone to join and our goal is to have over 100 centers participate. The study is open until February 2027. We prefer that participants record and submit data for the entire year of 2026 but will accept less if necessary. This is a great opportunity for smaller centers and under-represented areas of the world to make a meaningful contribution to an impactful project.
For additional questions and guidance email Abby Grothe at abigail-grothe@uiowa.edu
The second project is “10,000 sarcomas.”
The goal of this project is to engage sarcoma specialists to capture more soft tissue sarcoma patients and data than has ever been previously recorded. The hope is that this can overcome the constant limitations of small numbers of patients to create a large dataset for extensive analysis.
Inclusivity and authorship are priorities for the registry effort. All participants will be listed as authors for any publications from these and future projects.
To join this study, email maria.smolle@medunigraz.at for more information.
We look forward to hosting a registry session on Friday morning at the Vienna ISOLS meeting in September.
We plan on this being an engaging and informative session with time for open discussion with the audience about authorship, how to propose a study, and where the International Sarcoma Registry should be in two years. This is a real opportunity to engage in the registry effort and help shape the future of international collaboration!