As the demand for total joint arthroplasty continues to increase, growing attention is being paid to arthroplasty registries, which can serve as vehicles for reporting outcomes and enhancing the quality of care patients receive. Although challenges to participation—such as the need for funding—must be overcome, registries can yield a great deal of data that can guide practice improvement and help to demonstrate the value of care.

An educational session hosted by the American Joint Replacement Registry (AJRR) and moderated by David G. Lewallen, MD, AJRR medical director, brought together a wide range of domestic and international arthroplasty registry experts to share their experiences with creating and maintaining registries and to discuss the benefits of registry collaboration.

International efforts
Henrik Malchau, MD, PhD, who helped develop the Swedish Hip Arthroplasty Register, noted some of the many important aims of registries. By monitoring data to improve outcomes and conduct clinical research, registries serve as a “quality control system.” Public reporting, he said, is an important element tied to registries.

“What have we learned in the past 30 years?” asked Dr. Malchau. The answer, he said, is that more registries are needed to help improve patient outcomes.

In addition, he noted that “we should be very skeptical and critical when new technology is introduced. Each country or region needs a registry with very strong support from the orthopaedic community.”

Goran Garellick, MD, PhD, director of the Swedish Hip Arthroplasty Register and past president of the International Society of Arthroplasty Registries (ISAR), noted that ISAR’s mission is to develop frameworks to encourage collaborative activities and to provide a support network for established and developing registries. According to Dr. Garellick, the increasing number of overlapping international organizations “threatens the focus on the important harmonization and standardization efforts.”

In addition, Dr. Garellick asserted that postmarket surveillance of implant devices must not be the only focus of registry efforts. Attention must also be paid, he noted, on monitoring the quality of healthcare public reporting, implementing continuous quality improvement, and conducting clinical research.

Keijo Makela, MD, of the Nordic Arthroplasty Register Association (NARA), noted that NARA is a collaborative effort established in 2007 with the national registries of Sweden, Norway, and Denmark. In 2010, Finland also joined in the collaborative effort.

According to Dr. Makela, a NARA minimum data set was created so that data could be collected from each of the participating databases in a standardized format. A significant number of peer-reviewed studies have used data from NARA, stated Dr. Makela, who also noted that registries in other countries, such as the Netherlands, have expressed interest in joining the collaborative organization.

Domestic registries
A wealth of different kinds of registries—including state-based, healthcare system-based, and institution-based—exist in the United States, creating a multitude of opportunities for collaborative efforts.

One state-based registry discussed during the session was the California Joint Replacement Registry (CJRR). According to Kevin J. Bozic, MD, MBA, chair of the CJRR, the registry provides “an efficient mechanism for collecting, analyzing, and comparing outcomes, including patient-reported outcomes (PROs).” Quarterly benchmarking reports and regular quality improvement workshops using CJRR data also help to share best practices.

Data for surgeons and hospitals participating in the registry related to factors such as case volumes, patient demographics and risk factors, surgical complications, and PRO results are benchmarked against CJRR average each quarter.

Some of the CJRR’s goals for 2014 include the following:

• Increasing the number of participating hospitals and surgeons
• Improving PRO collection rates
• Public reporting at hospital level
• Collaborating with other registries
• Engaging in research projects
• Refining and implementing a sustainable business plan

The CJRR currently collaborates with organizations such as the International Consortium of Orthopaedic Registries (ICOR) and the International Society of Arthroplasty Registers (ISAR). It also supports the expansion into California of the AJRR, which has made significant progress in collecting level 1 data on a national basis since it officially began operations in August 2011. As Dr. Lewallen noted, the AJRR now has a pilot program to begin collecting level 2 and level 3 data.

“The AJRR currently has data on more than 90,000 procedures, and is getting data on around 2,000 new procedures each week,” noted Dr. Lewallen. “In 2011, we had 11 participating hospitals, but today we have 248 participating hospitals.”

The AJRR has now launched a formal recruitment effort to achieve 90 percent participation by all U.S. hospitals where hip and knee implant procedures are performed by the end of 2018.

“We are making progress toward the goal of becoming the first comprehensive national hip and knee orthopaedic implant registry in the United States,” noted Dr. Lewallen.

According to Dr. Lewallen, the following factors are critical to the registry’s success:

• multi-stakeholder governance
• stable funding model
• incentivized (versus mandated) reporting of level 1 data by hospitals
• data analysis and annual reporting under the direction of a commission of conflict-free arthroplasty experts (but with multi-stakeholder oversight of the AJRR board of directors)

In addition, noted Dr. Lewallen, “protection of confidential data is essential for patients, physicians, hospitals, and implant manufacturers.

Dr. Lewallen also highlighted the need to develop a system enabling collaboration among U.S. registries. For this kind of collaborative effort to be successful, he stated, many factors would need to be determined, such as how one-time reporting of data to the AJRR and collaborating registries would occur. In addition, two-way data sharing of results would need to be possible so that local registries would be able to capture revision events that occur elsewhere in the country. Plans would also need to be developed to enable a cooperative effort in soliciting financial support and equitable revenue sharing.

As the session concluded, Dr. Lewallen emphasized the importance of registry collaborations in the future, raising the question of whether an organization analogous to ISAR should be created in the United States to create shared governance for U.S. registries and facilitate collaboration. He encouraged those interested in discussing this idea further to attend the upcoming meeting of the Third International Congress of Arthroplasty Registries (see box), where a session on U.S. registries will provide the opportunity for more exploration of the concept of creating a society for American arthroplasty registries.

Learn more about AJRR
Contact the AJRR at info@ajrr.net or 847-292-0530. To visit the registry online, go to www.ajrr.net

Jennie McKee is a senior science writer for AAOS Now. She can be reached at mckee@aaos.org

AJRR sponsors
American Association of Hip and Knee Surgeons
AAOS
Hip Society
Knee Society

Biomet
DePuy Synthes
DJO Surgical
Exactech
Smith & Nephew
Stryker
UnitedHealth Foundation
WellPoint
Wright Medical
Zimmer

International Congress of Arthroplasty Registries
The AJRR invites those interested in registries to consider attending the Third International Congress of Arthroplasty Registries, May 31–June 2, in Boston. The Congress is hosted by the International Society of Arthroplasty Registries in conjunction with the AJRR and Massachusetts General Hospital. For more information, visit the AJRR website, www.ajrr.net