The International Sarcoma Registry working group is made up of 10 individuals from the US, Europe, India, Pakistan, Brazil, Argentina, and Australia who represent ISOLS, MSTS, EMSOS, APMSTS, and SLATME. The group holds monthly zoom calls which are consistently thoughtful and productive (despite being very challenging to schedule given the time differences). The overall goal of this effort is to improve the quality and utility of clinical research in orthopaedic oncology by encouraging international collaboration through a sarcoma registry.
Creating a singular worldwide registry was not realistic given the challenges with international data sharing, patient confidentiality, sustained funding, data housing, and data ownership.
However, we can all agree to collect the same data points in the same manner. If everyone collects consistent and comparable data, then multi-institutional, multi-national collaborative projects capable of drawing real conclusions to questions that have eluded answers for decades is possible.
Our first task was to create a minimal dataset of elements that were necessary and informative to identify sarcoma patients to be included in the registry. We agreed upon 25 items including patient and institution information, tumor characteristics (location, size, grade, metastasis), and generalized treatment details (surgery, systemic treatment, radiation). This form should be able to be completed without the help of a research assistant in one or two minutes, meaning that even busy surgeons can take the time to complete this form.
Soon we will be distributing the minimal dataset elements, a data dictionary, and an example REDCap and Excel form demonstrating how a data collection instrument could be created in anyone’s practice even with limited resources and support. We encourage all orthopaedic oncologists to begin using the minimal dataset to start capturing information on their own sarcoma patients. Our next project will be to come up with a research question that can be answered using the minimal dataset and offer participation to all interested parties. We hope that there is enough enthusiasm behind this effort to prove that meaningful collaborative research is possible on a global scale.