This coalition is a group of 23 medical societies –sponsored or physician-led clinical data registries working together to advocate for public policy changes that will promote the development of registries and strive to remove barriers to the registries. AJRR Executive Director Jeffrey Knezovich and Government Relations Consultant Judi Buckalew are active members of the coalition.
Collaborations, Affiliations, and Other Registries
Collaborating and aligning with like-minded registry organizations is an important strategic goal of ours. You can see by the descriptions below some of our involvement with these organizations.
Operation Walk USA is an independent medical humanitarian organization that provides free hip or knee replacement surgeries to patients in the US. Operation Walk USA benefits US citizens and permanent residents who do not qualify for government assistance programs and cannot afford surgery on their own. Operation Walk USA is committed to helping those in need by restoring their mobility, self dignity, and productivity, thus helping them return to work and their social activities. As an organization, we are proud to be a partner with this worthwhile initiative. Our data collection software is used to house the basic demographic and procedural data collected on these patients so the staff and surgeons of Operation Walk USA can track outcomes of these procedures over the coming years.
For more information on this worthwhile organization, click here.
Created by the American Medical Association (AMA) in 2011, the National Quality Registry Network (NQRN) is a voluntary network of registry stewards and other stakeholders interested in advancing the development and use of registries to evaluate and improve patient outcomes. In 2013, the AMA led an evaluation of registries on behalf of the NQRN regarding the operations and sustainability of existing registries. AJRR participated in a survey of all registries and plans to continue to provide input and collaborate on their initiatives, such as the registry maturational framework. AJRR was also named a member of the NQRN Council and two of our staff members serve on both the Communications Subcommittee (Lori Boukas) and Leading Practices Committee (Caryn D. Etkin, PhD), cementing the alliance between the two organizations. In 2016, NQRN was restructured and the program was rebranded into the PCPI program.
More information about NQRN can be found here.
Started in 2011 and funded by Blue Cross Blue Shield of Michigan (BCBSM) and Blue Care Network (BCN), MARCQI seeks to create a statewide quality improvement infrastructure by developing a consortium of hospitals in Michigan to engage in quality improvement activities for hip and knee joint replacement procedures. Since its inception, MARCQI has been a strong partner with us. After signing formal partnership agreements in early 2013, MARCQI now submits data directly to us on behalf of eligible participating hospitals. While there are 50 hospitals in MARCQI, both parties have regular discussions to ensure MARCQI participants have the opportunity to have their data submitted to us as well. Additionally, MARCQI Co-Directors, Drs. Brian Hallstrom and Richard Hughes serve on AJRR’s Data Management Committee, with Dr. Hallstrom serving as Chair of AJRR’s Data Analysis Workgroup. For more information, please click here.
ISAR is a global consortium of joint replacement registries. This consortium facilitates the sharing of information to enhance the ability of participating countries to meet their own objectives. ISAR also assists in the development of collaborative activities and provides support to both established and developing registries, such as AJRR. We are an Associate member of ISAR and remain actively involved in the organization in a variety of capacities. Visit the website here.
ICOR was established by the U.S. Food and Drug Administration (FDA) and rolled out during a workshop in May 2011. The intent of this workshop was to facilitate discussion among FDA and worldwide orthopaedic registries that have implant information to further collaborate through a research network that pools the collective experience and available data. Dr. David G. Lewallen serves as a member of the ICOR Steering Committee. Initial ICOR projects currently underway include development of a worldwide implant database, comparison of various bearings used in hip arthroplasty, and comparison of fixed and mobile bearings used in knee arthroplasty. Learn more about ICOR here.
ArthroplastyWatch is a Swedish-based information project that was developed in 2011–2012. This project was developed to collect data on arthroplasty safety issues from around the world and from a variety of sources. This information is then disseminated via a publicly available single site. Data are continually collected and monitored by a team of experts, such as Dr. David G. Lewallen, who is a member of the ArthroplastyWatch Advisory Board. More about Arthroplasty Watch can be found here.