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Proposed new registry aims to advance sarcoma care

The University of Iowa is one of six leading centers around the United States conducting a pilot project to collect data on bone and soft tissue sarcoma treatment procedures with the goal of improving care for patients who have musculoskeletal tumors.

Each of the six major medical centers participating in the Musculoskeletal Tumor (MsT) registry feasibility pilot—launched and coordinated by the American Academy of Orthopaedic Surgeons (AAOS) and the Musculoskeletal Tumor Society (MSTS)—has been tasked with determining the most efficient and accurate methods for capturing data and submitting it to the registry. The year-long effort will assist AAOS and MSTS in optimizing the data-collection model before opening the registry to more sites.

Orthopedic surgeon Benjamin J. Miller, MD, UI associate professor of orthopedics and rehabilitation, says the pilot project paves the way for a robust source of information that will advance patient care, not just at University of Iowa Holden Comprehensive Cancer Center but at centers nationwide.

“The MsT registry will fill a gap in current sarcoma care by focusing on quality-of-life and functional outcomes in addition to oncologic end points,” says Miller, who is the physician leader on the UI’s MsT registry pilot team. “Our national team of orthopedic oncologists has been working on this for over three years. We are incredibly excited to start enrolling patients and collecting data.”

Miller says the initial focus will be on tracking function, complications, and outcomes in patients who are treated for bone or soft tissue sarcomas. The effort could later expand to include other musculoskeletal tumors and metastatic diseases of bone.

“The registry is unique in its focus on surgical decision-making, postoperative complications, reconstruction durability, and functional outcomes as well as oncologic questions of survival and local recurrence,” Miller says. “We hope the information gleaned can guide us to improve quality and patient safety and to address questions that have remained unanswered for decades.”

Other organizations joining the University of Iowa in the MsT pilot phase are Cleveland Clinic, Dartmouth College, Johns Hopkins University, Ohio State University, and Stanford University.

“The six pilot sites play a critical role in ensuring we appropriately define what and how we capture data in this complex specialty,” says William J. Maloney, MD, chair of the AAOS committee that oversees the group’s registry programs.

The pilot trial is funded by a grant from the Orthopaedic Research and Education Foundation.

Wednesday, February 27, 2019