Published 7/30/2025
Sarcoma is elusive by nature — biologically diverse, diagnostically complex, and often miscategorized by both patients and clinicians. It is the kind of diagnosis that too often falls through the cracks of traditional cancer care models. But for orthopaedic oncologists, sarcoma is not rare — it is personal. Now, through the AAOS Musculoskeletal Tumor Registry (MsTR), the specialty is building the collective power to understand, measure, and improve sarcoma outcomes like never before.
This July, as Sarcoma Awareness Month puts a national spotlight on these rare malignancies, orthopaedic oncologists have something new to rally around: momentum.
Building toward benchmarking while delivering value
Although full cross-institutional benchmarking is still in development, the MsTR already provides meaningful value to participating sites. Surgeons can access structured, visualized extracts of their own data, track outcomes over time, and gain a clearer view of treatment patterns and trends within their practice.
These improvements are shaped and guided by the MsTR Steering Committee, a national group of orthopaedic oncologists and registry experts who provide strategic oversight and help ensure that the registry aligns with clinical realities. Members include Chair Benjamin J. Miller, MD, MS, FAAOS, of the University of Iowa; Meredith Bartelstein, MD, FAAOS, of Memorial Sloan Kettering Cancer Center; Adam Levin, MD, FAAOS, of Johns Hopkins Medicine; and Eric Henderson, MD, FAAOS, of Dartmouth Health. Their ongoing input informs both the infrastructure and direction of the registry.
“We’re doing the work to get this right — not just collecting data, but ensuring it’s usable, clean, and entered in a way that supports real-world decision-making,” Dr. Miller said.
Dr. Levin emphasizes the scale of the achievement: “Compared to other registries in their early years, MsTR is on par and, in many ways, more ambitious. The complexity of sarcoma makes this effort even more impressive.”
Changing the narrative around sarcoma
Sarcoma is often misunderstood, even within the broader medical community. It is frequently perceived as a diagnosis with a uniformly poor prognosis and limited treatment options. However, orthopaedic oncologists know this is not the full picture. Many subtypes of sarcoma respond well to surgery, radiation, and systemic therapies, especially when diagnosed early and managed by a multidisciplinary team. For example, patients with resectable osteosarcoma or soft-tissue sarcomas with favorable histology can experience meaningful survival and long-term function, particularly when treated at specialized centers.
“There are effective treatment options,” Dr. Bartelstein explained. “But without real data, we can’t prove what works — or why.”
Another common misconception involves confusion between primary bone sarcoma and metastatic bone disease. Although the former originates in the bone and often requires limb-sparing surgery and sarcoma-specific chemotherapy, the latter refers to cancers such as breast, prostate, or lung that have spread to the skeleton and follow a completely different treatment path. This distinction is critical for diagnosis, treatment planning, and communication between care teams.
The MsTR plays a central role in correcting these misunderstandings by clearly defining diagnostic categories and capturing real-world treatment and outcome data across institutions. It also reinforces the role of orthopaedic surgeons as core members of the oncology team — not just performing surgery, but guiding care throughout the patient’s treatment and survivorship journey.
Dr. Miller emphasized, “Orthopaedic surgeons are cancer doctors. We’re not on the periphery — we’re central to the treatment and survivorship experience. The MsTR is helping us define that role more clearly.”
More than a registry
Launched in 2019 and now capturing data on more than 2,000 sarcoma cases, the MsTR was never designed to be a static warehouse of numbers. Instead, it was built from the ground up to align with three guiding pillars:
- Flexibility to evolve alongside clinical realities
- Minimal burden on participating surgeons and sites
- High-quality, structured data collection
Over the past three years, every enhancement to the registry has been in service of these principles. Standardized, clinician-entered data elements were created to ensure consistency across institutions. Built-in validation logic and routine quality checks ensure the integrity of every data set submitted.
A new participation option was designed to support flexible, staged participation for sites not yet ready for full electronic health record (EHR) integration. These changes are not just backend upgrades — they directly impact how easy it is to enter, extract, and interpret the data that drive better patient care.
Participation as a professional imperative
Joining the MsTR is more than contributing to research — it’s a practical way for orthopaedic oncologists to improve care, collaborate across institutions, and gain insights into their own outcomes.
“The questions we’re asking can’t be answered by any one center,” Dr. Bartelstein said. “The Registry gives us the scale and structure to finally tackle those gaps.”
“Contributing is gratifying,” Dr. Henderson shared. “It helps me reduce uncertainty in my own practice, and I know I’m helping advance the field.”
For surgeons who want to stay on the leading edge of sarcoma care, participating in the MsTR is both a meaningful contribution and a practical tool for day-to-day improvement.
The hidden architects of registry success
MsTR continues to shine as a powerful tool in advancing care for patients with musculoskeletal tumors. Behind its technical scalability are two key contributors: Matthew Watson, of the University of Iowa, and Matthew Rerko, of Cleveland Clinic.
Watson led the development of the Epic-integrated SmartForm, enabling clinicians to capture structured, standardized data at the point of care — within their natural workflow. To extend access beyond Epic-based systems, Rerko developed a REDCap-based clinician-entered form: a flexible, EHR-agnostic solution that allows institutions of all sizes and technical capabilities to participate.
Together, these complementary tools form the foundation for broad registry adoption, ensuring data quality and usability are not compromised as MsTR expands.
Thanks to this forward-thinking infrastructure, the MsTR continues to grow, helping the orthopaedic oncology community collect the insights needed to drive better outcomes and improve care for patients with this rare, complex disease.
“SmartForms, standardized logic, easy extract tools — it’s all there. The lift is lighter than people think,” Dr. Levin emphasized.
A call to engage
The MsTR has undergone remarkable evolution since its inception, mirroring the maturation of the sarcoma field itself. What began as a foundational effort to collect standardized data has grown into a dynamic, nationally recognized platform. Today, the registry boasts a validated data infrastructure, increasing case volume, and a robust governance model led by a national steering committee of multidisciplinary experts.
Recent enhancements have further elevated the registry’s impact. These include the integration of patient-reported outcomes, expanded data elements to capture metastatic bone disease, and improved interoperability with EHRs. These upgrades not only streamline data collection but also enrich the clinical insights available to participating sites.
With these advancements, the MsTR is positioned not just as a data repository, but also as a transformative tool for benchmarking, quality improvement, and research. It is poised to shape the next generation of sarcoma care by enabling more precise, patient-centered, and evidence-based decision-making across institutions.
Whether you are a current participant or just considering it, there has never been a better time to get involved. This is how orthopaedic oncologists will shape the future of sarcoma care — together.