Limb Loss and Preservation Registry: What O&P Practitioners Need to Know

Published in Orthotics & Prosthetics on June 24, 2022

The Limb Loss and Preservation Registry (LLPR) has been talked about for the past two to three years. On May 8, 2022, the Limb Loss and Preservation Registry was officially launched by Mayo Clinic. Led by Dr. Kenton Kaufman, Ph.D., a researcher from Mayo Clinic, the Limb Loss and Preservation Registry is the first warehouse of data for people who have lost limbs or who may or may not have access to prosthetics.

Why is a Registry Important?

“There is no source of national data that provides information on limb loss in the United States. There are some figures that are frequently quoted, but that data was based on some projections of data that was gathered in the 1990s,” said Dr. Kaufman. “The lack of data for this specific population of individuals with specific physical disabilities hampers the treatment and rehabilitation efforts for these individuals.”

The Limb Loss and Preservation Registry is designed to gather this data and make it available so that the community and profession can provide better care for individuals with limb loss and limb difference. This is important to O&P practitioners to know because clinicians are expected to support their decisions using evidence-based data. However, much of the evidence used today is either anecdotal, opinion, or undocumented. The lack of objective scientific evidence to support clinical decision making doesn’t necessarily allow us to get the best outcomes for the patients we want to serve.

How Does the Registry Work?

The goal of the registry is to bring together three sources of data, including data from hospitals regarding amputations, data from providers regarding the care that the individual receives, and the outcome of the patients that are receiving that care. Bringing together all three sources of data is important because only about 25-30% of individuals with lower limb amputations actually receive a prosthesis.

Participating in the LLPR will take no more time to participate in the registry than you currently use to provide patient care. We are working with the O&P electronic health record (EHR) providers and supplier partners, such as Nymbl Systems and OP Solutions, to bring in the data that a prosthetist is already collecting to get paid. So, we are not creating any extra work for the prosthetist during their daily routine. The LLPR simply gathers the data that is being generated in the normal daily functions of a clinic.

Currently, there is no cost to participate as an individual clinician or individual O&P practice to participate. The costs are currently born by the federal contract that the Mayo Clinic has obtained. In the future, there will be a subscription cost to cover the costs of the operation. Dr. Kaufman and his team are currently meeting with focus groups to determine what these costs would be and what everyone feels will be reasonable and manageable for the practices.

How to Get Involved

To get involved in this project, fill out this form to express your interest in participation. From there, you will be connected to someone from Dr. Kaufman’s team to fill out the participation agreement to get the program up and running for your practice.