American Academy of Orthopaedic Surgeons announces its Musculoskeletal Tumor (MsT) Registry Pilot
Year-long effort includes six pilot sites at major U.S. academic centers
ROSEMONT, Ill. (February 6, 2019)—The American Academy of Orthopaedic Surgeons (AAOS) - in collaboration with the Musculoskeletal Tumor Society (MSTS) - announced the launch of a Musculoskeletal Tumor (MsT) Registry feasibility pilot to begin capturing data on orthopaedic oncology, bone tumor procedures in a structured and scalable way. Six major U.S. academic centers will participate in this year-long program: Cleveland Clinic; Dartmouth College; Johns Hopkins University; The Ohio State University; Stanford University; and The University of Iowa.
"This 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 Benjamin J. Miller, MD, MS, and associate professor with the University of Iowa's Department of Orthopaedics and Rehabilitation and its physician leader on the MsT registry pilot team.
"The MsT registry will initially focus on tracking function, complications, and outcomes in patients treated for a bone or soft tissue sarcoma, with potential to expand to include other musculoskeletal tumors and metastatic disease of bone in the future," says Dr. Miller. "This should allow for a comprehensive and accurate assessment of the current state of treatment and the efficacy of various treatment strategies. We are hopeful that this resource may be used to advocate for the best treatments and management strategies on behalf of our sarcoma patients."
Data elements will include patient demographics, patient baseline and examination, tumor baseline, treatment and post-treatment, and surgery detail along with postoperative data (e.g., oncologic failure, surgery complication, vital status), patient-reported outcomes, and more. "The registry will provide relevant data to help inform surgical decisions that must be made early in orthopaedic oncologic treatment, but with consequences that reverberate for decades," says Dr. Miller.
The MsT registry pilot is led by a steering committee of volunteer representatives from the AAOS and MSTS, and reports into the AAOS Registry Program Registry Oversight Committee (ROC).
"This pilot is an important milestone for the growing AAOS Registry Program as it will be the first diagnosis-based registry of the AAOS portfolio," says William J. Maloney, MD, the Boswell Professor of Orthopaedic Surgery at Stanford University and chair of the ROC. "The six pilot sites play a critical role in ensuring we appropriately define what and how we capture data in this complex specialty. The ROC looks forward to evaluating the feasibility of this endeavor in collaboration with our MSTS colleagues, supporting the development of a registry for orthopaedic oncology patient care."
Says R. Lor Randall, MD, FACS, a professor and The David Linn Endowed Chair in Orthopaedic Surgery at the University of California, Davis, and president of MSTS, "We are delighted to see this herculean effort come to fruition. These patients are afflicted with rare and often aggressive tumors. Via this registry, we will learn a great deal about their condition. Accordingly, we can then improve treatments and better address their needs."
The pilot sites are large, academic referral centers serving a regional population of sarcoma patients. Each pilot site is charged with using individual institutional resources and workflows to determine the most efficient, simplest, and most accurate methods to capture and submit data. The experiences gleaned from the MsT registry pilot will translate into templates and lessons that can be applied as future sites are enrolled into the registry.