Musculoskeletal Tumor Registry Collects QoL Data After Surgery in Sarcoma

Benjamin J. Miller, MD, MS

In an effort to obtain more quality-of-life (QoL) data following surgery for patients with sarcoma, the Musculoskeletal Tumor Registry (MsTR) was created to capture such findings in a centralized location for the orthopedic oncology community, explained Benjamin J. Miller, MD, MS.

“About 3 years ago, we identified that there was enough inertia, energy, and support among the Musculoskeletal Tumor Society, in addition to the technology being in the right place, that we began to define what a registry would look like,” said Miller. “It took a long time and a lot of effort. A lot of people contributed a lot of time and energy into this, and we came up with the data that we wanted to collect.”

The American Academy of Orthopaedic Surgeons (AAOS) and Musculoskeletal Tumor Society (MSTS) began a partnership in 2018 to create the MsTR after 2 years of preparatory work by a registry group and grant funding from the Orthopaedic Research and Education Foundation (OREF) and MSTS. The purpose of the registry is to provide functional and QoL outcome measures, as well as oncologic endpoints. These are poised to minimize provider burden while maximizing accuracy and relevance for orthopedic surgeons.

In January 2019, a pilot phase of the registry included 6 institutions to establish a workflow for institutional enrollment, data entry and abstraction, and provider interaction. Criteria for the registry includes patients of any age diagnosed with a primary sarcoma of the bone or soft tissue in the pelvis or extremities treated with surgical resection.

Baseline patient demographics, tumor characteristics, adjuvant treatment, procedural details, implants, adverse events, and outcome measures are recorded with a goal of capturing 80% complete and accurate data in 80% of patients.

Currently, the registry is seeking to add more institutions that can enroll patients with sarcomas, Miller added.

In an interview with OncLive^®, Miller, co-leader of the Sarcoma Multidisciplinary Oncology Group and associate professor at the University of Iowa, discussed the creation of the MsTR and how it is poised to make progress in the orthopedic oncology field.

OncLive: Could you discuss the creation of the MsTR?

Miller: This project has been ongoing for around 3 years, when the MSTS first identified that having a national registry would be important. A number of registries already exist that are really good for a lot of different reasons, but we recognized that there was no registry focused on the outcomes that are most important to us and our patients, which are functional outcomes, QoL, and other things that, as surgeons, we have a lot of control over. In addition to recording the basic survivals, local recurrence, and other important factors, we also wanted to get into the details of surgical treatment and how patients perform after treatment.

We received a grant from the OREF and the MSTS that paid for a lot of the startup costs. We identified the AAOS as a partner in order to make this registry happen; it really worked out well. There is a lot of synergy between the AAOS, as they're looking to develop family registries within orthopedics that look at a lot of different subspecialties and different diseases. We were able to partner with them to answer these questions.

We finished our pilot phase of the trial. We identified 6 large academic institutions to work on data collection, hash out the different data elements that we would collect, and start to turn out a product. Although it's a quality improvement registry, we wanted to make sure that everything is research quality that was of minimal burden to providers and would be inclusive to members of our society who want to participate.

How could this registry impact the field of orthopedic oncology?

For the institutions and the providers that participate, it will be important because these are real-world knowledge and data of what actually happened. How many patients with sarcoma are being treated? How do we treat them? From a provider's point of view, it is going to be nice because they'll get feedback in the form of dashboards. They can look and compare themselves to national benchmarks to see how they're doing over time and how their patients are doing longitudinally.

This is a qualified clinical data registry that is recognized by the Centers for Medicare and Medicaid Services (CMS) and will qualify people for Merit-Based Incentive Payments System and for other portions of CMS requirements. We think that there is going to be an institutional benefit for this, as well.

In the long-term, our hope is that as these data comes back, not only will we be able to use it for quality and patient safety, we will also be able to answer some questions about the impact of surgical procedures in terms of the patients we treat, and perhaps answer some very long-standing questions about what method of treatment is better from a surgical perspective. That is all many years off, but is certainly the goal. It is exciting when you think about it.

What is the current status of the registry and what are the next steps?

It's still in the realm of the pilot phase but it exists at 6 institutions. We're all just entering data, looking through, seeing how it works, and seeing how the data collection goes. We had a big revision before the end of 2019 to say, "Here's our finished product."

The exciting thing about the 2019 MSTS Annual Meeting is we were able to announce to the society that we're ready for the next phase of this [registry]. For anyone who wants to participate, let us know. Let's start the work to get the institutional approvals and get everybody up and running from a technological perspective. The goal is to open this [registry] and start to collect data the spring [of 2020].

What should physicians know about the registry?

[The registry] is an important effort in taking care of patients with sarcoma because it addresses that previously unaddressed area of surgical recovery and functional outcomes. Anybody who takes care of sarcoma and patients should be aware that this registry exists and would provide some element of knowledge regarding how the surgery impacts the end result of sarcoma care.

For orthopedic oncologists, be aware that this data collection mechanism exists; this registry exists. Hopefully, any sarcoma center with access to an orthopedic oncologist who is a member of the MSTS [will take advantage of the registry]. We're looking for partners, so go to the AAOS website and search under “Registries” and let us know that you're interested.

What intriguing research is ongoing in the orthopedic oncology field?

A lot of the compelling research that's coming out in sarcoma is looking at newer treatments. We all recognize that we don't have sarcoma figured out; the cure rates could be better. In general, we're all looking for assertive enrollment into clinical trials. All of these newer systemic interventions that are coming on the market are very exciting, but to date haven't changed clinical practice. As orthopedic surgeons, we collaborate with a lot of other medical oncologists, physicians, and practitioners who treat patients with sarcoma. We all agree that accessing clinical trials, enrolling patients on clinical trials at the beginning of treatment, and making sure that patients are treated in a sarcoma center are very important. I'm always excited to see the results of those [clinical trials].

Specifically, for orthopedic oncology, there is a lot of work going into functional outcomes and understanding patient experience. We had a nice symposium on adolescent and young adult cancers and how taking care of patients with sarcoma in a certain age group takes a different thought process and has different challenges. Those issues, in addition to just making sure we're doing the right surgery, are all important and exciting.

What are some challenges in the field and how are they being addressed?

One of the unique challenges in orthopedic oncology is, when you treat patients for cancer and they survive, often the procedures that we're doing involve implants that are going to give them issues with durability in the future. One of the challenges is always after the initial stage of cancer care when someone is cured.

Twenty or 30 years later, when they are starting to have an extremity reconstruction that's not working anymore, how do you take care of that? Is there anything that you can do upfront to perhaps give them a more durable and functional result? These are issues that are potentially unique to the orthopedic oncology community because the role we play in sarcoma care and cancer care is to not only resect the primary tumor, but also to reconstruct extremities in a way that will give the most durable, functional, and pain-free result.

Are there any precision medicine efforts in this field?

It depends on how you define [precision medicine]. From a surgical perspective, you're treating each patient as an individual, and they may have different ages, body sizes, and goals in terms of how functional they want to be and what activities they want to do. To a certain extent, you're always making patient-specific decisions based upon that. It's certainly a team approach and we're aware of these newer medications and treatment profiles that are coming along the pipe. [Research in orthopedic oncology] is more surgical decision-making based upon the patient and their goals.

Miller BJ, Levin A, Calvert G, Henderson E. Update on the American Academy of Orthopaedic Surgeons Musculoskeletal Tumor Registry. Presented at: 2019 Musculoskeletal Tumor Society Annual Meeting; October 2-4, 2019; Portland, OR. Abstract 2.