The International Sarcoma Registry

October 15, 2025

The International Sarcoma Registry (ISR) is a joint effort between the five multi-national orthopaedic oncology professional societies in the world: MSTS, ISOLS, SLATME, EMSOS, and APMSTS.  Each organization supplied two members for representation in a working group, which first assembled via Zoom in January of 2025. 

The first tangible effort of the working group was to create a Minimal Data Set (MDS) that would include a parsimonious but meaningful number of patient, tumor, and treatment factors to correctly identify a primary sarcoma of the pelvis or extremities that meets registry inclusion.  The MDS was modeled from sarcoma registry experience in the US, Europe, and Australia and was agreed upon by the working group at the EMSOS meeting in Padua, Italy in April 2025.

The MDS and accompanying data dictionary are to be freely distributed to all orthopaedic oncologists globally, and all are encouraged to incorporate into their clinical workflow to accurately identify and record data on sarcoma patients in anticipation of future collaborative research.  The working group created a REDCap and Excel form of the MDS that is open and free for anyone to download and access on request.  It may be used as a template and modified to accommodate different workflows, but the items, wording, and choices should not be changed to maintain data fidelity.

Relationship to the AAOS Musculoskeletal Tumor Registry (MsTR)

The ISR is a parallel and complementary effort to the MsTR, although the ISR is completely provider driven and maintained by each participant at their individual institution.  The ISR MDS was designed to include the data elements contained within the MsTR “Alternate Entry Pathway” short form.  The full version of the MsTR data collection instruments will also include all elements in the ISR MDS.

Anyone who participates in the MsTR and contributes data will also be collecting the data needed for the ISR MDS.  Therefore, surgeons who contribute to the MsTR will be eligible for projects originating in the MsTR and ISR.

For those not participating in the MsTR, the ISR MDS is an opportunity to join the international community of orthopaedic oncologists to collect data in a way that is systematic, reproducible, accurate, and meaningful.  Although it will not allow for data contribution to the MsTR, and therefore will limit participation in MsTR research, national benchmarks, and other registry benefits, the MDS will allow for participation in ISR-sponsored investigations.

For any questions or to request the REDCap or Excel MDS and data dictionary, please reach out to our research coordinator Abby Grothe at [email protected].