Insights from Michael Choo, MD, a founding member of the external collaborative panel of the Limb Loss and Preservation Registry

In honor of National Limb Loss Awareness month, Paradigm is highlighting the Limb Loss and Preservation Registry (LLPR) project led by Mayo Clinic in Rochester, NY. The LLPR would house the largest data set for limb loss and preservation in the U.S., that can be used to promote and optimize the prevention, treatment, rehabilitation, and ultimately lead to the best functional potential of patients and injured workers with limb loss.

We interviewed Michael Choo, MD, Paradigm Chief Medical Officer and Senior Vice President, who is a founding member of the LLPR’s first external collaborative panel, to learn how the registry will help patients and health care providers reach better outcomes. He is honored and excited to be working with Kenton Kaufman, PhD, who is leading the LLPR initiative at the Mayo Clinic.

“We’re seeing an increased number of limb-related preservation interventions and amputations, due to increasing medical conditions like diabetes, vascular disease, and sepsis. In addition, our accident related limb injuries, as well as military related limb losses have added to the level and number of disabilities associated with the loss of extremities. With the current limb loss and amputation care being highly variable, there was a need to better understand what the best practices should be to care for people being afflicted by issues related to limb loss,” says Dr. Choo. The LLPR project was funded in September 2018 and is supported by a partnership between the National Institute of Health (NIH) and the Department of Defense (DoD).

Care associated with limb loss and preservation begins at the onset of limb impairment and/or injury and can involve a wide range of patients of all ages leading to significant disability and functional impairment, depending on the severity. According to Mayo Clinic, approximately 54% of all amputations are the result of vascular disease and 45% are trauma related. The remaining 1-2% of amputations are the results of cancer or a congenital deformity. In addition, the Amputee Coalition of America estimates there are 185,000 new lower-extremity amputations each year in the U.S. alone. The LLPR will obtain its data from a variety of sources starting with hospital records related to amputations, clinical providers who are treating the limb loss population, prosthetic and orthotic manufacturers, and even individuals who are self-reporting information about their clinical and care status related to their limb loss.

The LLPR’s primary goal is to bring together all entities who are stakeholders in the care of limb preservation and limb loss with knowledge and perspectives from all different vantage points and situations. The LLPR will ultimately become a very expansive and comprehensive registry, specific to limb loss and preservation patients, and track the entire process from acute hospital event to home care. The LLPR would have the ability to gather and collect crucial medical issues, treatments, recovery milestones, and clinical outcomes as the care progresses over time. “The goal is to analyze the amazing longitudinal clinical data points and produce actionable insights, including needed benchmarks for limb loss population. I am confident that in time, the registry will support providers and other stakeholders with evidence for the benefit and risk associated with different treatment modalities, as well as comparative effectiveness involving prosthetic, orthotic, and other durable medical equipment. The LLPR will become the much needed national data repository to support the information needed to drive evidence-based clinical decision making in limb loss care,” explained Dr. Choo.

A unique feature of this registry is that patients will have just as much access and engagement potential as providers, manufacturers, and payors. LLPR is implementing an interactive portal to help patients connect with the registry to provide their insights as to what modalities work best for them, and what they have found to be helpful for improving their quality of life. This is in addition to gaining access to clinical best practice information to aid in their shared medical decision-making. Patients will also have access to resources that can help them adapt and function in society. Dr. Choo shared, “Patients will be able to communicate with peers with similar limb loss conditions through LLPR’s information portal to discuss their needs and questions related to social, psychological, and emotional support issues in addition to information that can help them make shared medical decisions.”

Dr. Choo stated “National initiatives like the LLPR provide tremendous value for conditions that are perhaps not very common in our industry, but frequent enough where a centralized data repository with longitudinal clinical information from all stakeholders, including patients, can facilitate gathering of evidence-based insights. This can improve quality of care and achieve the best possible functional outcomes for patients with limb loss, which is precisely what Paradigm does for our catastrophic injury cases.”