Year-long effort includes six pilot sites at major U.S. academic center
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, an 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 in 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.
AAOS Registry Program
The AAOS is the world’s largest medical association of musculoskeletal specialists. The MsT registry pilot will be the third in a series of registries in development as part of the AAOS’ Registry Program. The American Joint Replacement Registry (AJRR)—the Academy’s hip and knee replacement registry—is the cornerstone of the AAOS’s Registry Program, and the world’s largest national registry of hip and knee joint replacement data by annual procedural count, with more than 1.5 million procedures contained within its database. In October 2018, the AAOS launched its Shoulder and Elbow Registry (SER) to begin collecting data on total shoulder and elbow procedures in the United States.
What is a Bone Tumor?
Most bone tumors are benign (not cancerous or life-threatening) and, in most cases, will not spread to other parts of the body. Depending upon the type of tumor, treatment options are wide-ranging—from simple observation to surgery to remove the tumor.
Some bone tumors are malignant (cancerous bone tumors that could metastasize) and can cause cancer cells to spread throughout the body. In almost all cases, treatment for malignant tumors involves a combination of chemotherapy, radiation, and surgery.
About the AAOS
With more than 38,000 members, the American Academy of Orthopaedic Surgeons (AAOS) is the world’s largest medical association of musculoskeletal specialists. The AAOS provides educational programs for orthopaedic surgeons and allied health professionals, champions and advances the highest quality musculoskeletal care for patients and is the authoritative source of information on bone and joint conditions, treatments and related issues.
About the MSTS
The Musculoskeletal Tumor Society advances the science of orthopaedic oncology and promote high standards of patient care through excellence in education and research.
More information about the AAOS
More information about the AAOS Musculoskeletal Tumor Registry
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