AAOS Registry Program Blog

AAOS Introduces Musculoskeletal Tumor Registry Pilot

Mar 11, 2019 10:41:35 AM

Year-long effort includes six pilot sites at major U.S. academic centers

Sarcoma

 

This article was originally published in the March 2019 issue of AAOS Now, the American Academy of Orthopaedic Surgeons (AAOS) monthly news magazine.

 

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 were selected to participate in the year-long program: Cleveland Clinic Foundation, Dartmouth-Hitchcock Medical Center, Johns Hopkins Medicine, Ohio State University–The James Cancer Hospital, Stanford Health Care–Stanford Hospital, and University of Iowa Hospitals and Clinics.

The MsT Registry Pilot is the third in a series of registries developed 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 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, AAOS launched its Shoulder & Elbow Registry (SER) to begin collecting data on total shoulder and elbow procedures in the United States. SER growth has been accelerated due to support from both AJRR participant sites and sites that are new to registries. The MsT Registry Pilot, like other AAOS Registry Programs, is dedicated to improved patient care and outcomes.

 

Closing a Gap in Sarcoma Care

“This registry will fill a gap in current sarcoma care by focusing on quality of life and functional outcomes in addition to oncologic endpoints,” said Benjamin J. Miller, MD, MS, associate professor in the Department of Orthopaedics and Rehabilitation at the University of Iowa and physician leader on the MsT Registry Pilot team.

“The MsT Registry Pilot will initially focus on tracking function, complications, and outcomes in patients treated for a bone or soft tissue sarcoma, with the potential to grow to include other musculoskeletal tumors and metastatic disease of bone in the future,” added 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 include data on patient demographics, patient baseline and examination, tumor baseline, treatment and post-treatment, and surgical details, as well as post-operative data (e.g., oncologic failures, surgery complications, 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,” stated Dr. Miller.

 

MsT Registry Pilot Roadmap

The MsT Registry Pilot is led by surgeon leaders from the pilot sites in collaboration with volunteer representatives from AAOS and MSTS and members of the AAOS Registry Program Registry Oversight Committee.

R. Lor Randall, MD, FACS, professor and David Linn Endowed Chair in Orthopaedic Surgery at the University of California, Davis, and president of MSTS, said, “We are delighted to see this Herculean effort come to fruition. These patients are afflicted with rare and often aggressive tumors. Via this registry pilot, we will learn a great deal about how they are doing. Accordingly, we can then improve treatments and better address their needs.”

The pilot sites are large academic referral centers serving regional populations 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.

Individuals or organizations interested in learning more and/or participating as future sites for MsT Registry Pilot efforts can go to www.aaos.org/registries to receive more information as it becomes available.

 

 

 

For information about the AAOS RegistryInsights platform, speak with a Registry Engagement Associate at (847) 292-0530 or Request A Demo today!

 

Be sure to leave a comment in the form below!

 

Topics: Musculoskeletal Tumor

A Message for Our Readers

This blog was created by the American Joint Replacement Registry (AJRR), part of the American Academy of Orthopaedic Surgeons (AAOS) Registry Program. The blog is part of our commitment to improve orthopaedic care through the collection, analysis, and reporting of actionable hip and knee arthroplasty data. Our purpose is to communicate with others in the orthopaedic field who share the same commitment. Watch for weekly news alerts, quick tips, actionable checklists, best practices, and research findings posted to this blog. It will be information you can use each week!

The more interactive you are, the greater the value shared. Visit us at www.aaos.org/ajrr, speak with a Registry Engagement Associate at 847-292-0530, or follow us on Twitter.

Subscribe to the Blog Now!

Data Snapshot

Did you know? The data included for analysis in the AJRR 2018 Annual Report reflect N=1,186,955 cumulative procedures submitted between 2012 and 2017 only, unless otherwise noted. This total includes N=2,074 procedures from ambulatory surgery centers. As AJRR adds participants that submit historical data, yearly volumes from prior years are continually updated. For example, the yearly procedural volume for 2016 grew by over 7% compared to the previous Annual Report.

Read more in the AJRR 2018 Annual Report.

Figure 6 from the AJRR 2018 Annual Report 

 

This Week's Blog

  • Monday, March 11, 2019 - AAOS Introduces Musculoskeletal Tumor Registry Pilot

 

This Week’s References

The American Academy of Orthopaedic Surgeons (AAOS)

With more than 38,000 members, the 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.

The Musculoskeletal Tumor Society (MSTS)

MSTS advances the science of orthopaedic oncology and promotes high standards of patient care through excellence in education and research.

 

 

 

AAOS RegistryInsights™

As a health care provider of orthopaedic services, you can access information about joining the AAOS Registry Program and RegistryInsights by visiting www.aaos.org/ajrr or speaking with a Registry Engagement Associate at (847) 292-0530.  Request an AJRR Demo

Recent Posts

AAOS Registry Program Staff Writers

AAOS Registry Program Blog posts are researched and created by Registry Program staff writers: Karen Metropulos, Erik Michalesko, and Lori Boukas. If you would like to contact the writing staff, email us at RegistryInfo@aaos.org

Disclaimer

This blog shares health care information from a variety of independent expert sources. Some sources offer opinions that may be of interest to other professionals facing similar challenges. Our approach helps ensure diverse, well-rounded presentation of important, often complex health care content. Shared content does not necessarily represent AAOS findings and practices. 

2018 MarCom Awards Gold Winner 

The AAOS Registry Program Blog won a Gold MarCom award in the digital media/writing/blog category. The MarCom Awards honor excellence in marketing and communication while recognizing the creativity, hard work, and generosity of industry professionals.

2018 MarCom Gold Award