This study is the first global effort project of the International Sarcoma Registry. The International Sarcoma Registry (ISR) is a novel effort with the support of the 5 multi-national sarcoma professional societies (ISOLS, MSTS, EMSOS, SLATME, APMSTS) and represents the majority of the world’s sarcoma specialists. This provides a unique opportunity to focus on questions of international importance and provides the ability to determine regional differences.
With several sites adding to their own data registries, a global effort can be made into understanding how sarcoma presents globally. Several factors would give insight into variability into referral patterns. Specifically, tumor size and presence of metastasis may be a surrogate for delays in diagnosis. Comparison of the percentage of patients presenting with inappropriate attempts at excision prior to presentation to a sarcoma specialist (i.e. a “whoops procedure”) would demonstrate areas where access is suboptimal and efforts for improvement justified. A global comparison could help providers, administrators, and policy makers compare their institutions to others and make informed decisions about educational efforts and resource distribution.
On this webpage you can find the resources to build the registry at your site (either through Excel or REDCap), a data dictionary defining all terms used, and the workplan for the ISR Variability in Sarcoma Presentation project.
- International Sarcoma Registry Minimal Data Set Workplan
- Data Dictionary
- Excel Data Collection Tools
- REDCap Survey Build Zip Drive
- Upload this zip file into REDCap to build your project - detailed instructions in .zip file as well.
If you have any questions about the project or the data collection tools, please reach out to Abigail Grothe, M.S. at abigail-grothe@uiowa.edu.