In collaboration with the Mayo Clinic, Colorado’s UCHealth — a clinical partner of the University of Colorado School of Medicine — has become the first hospital system in the U.S. to agree to provide data to the Limb Loss and Preservation Registry (LLPR). The newly created national database collects limb loss and limb preservation patient data to improve the quality, safety, and effectiveness of limb loss treatment and limb loss preservation.
Danielle Melton, MD, visiting associate professor in the Department of Physical Medicine and Rehabilitation, is leading the efforts. She says the Colorado system is the first of more than 25 hospital systems slated to join the LLPR over the coming year.
“The information we currently have on limb loss, and the incidence and prevalence of limb loss in America, is based on really old data, and we don’t even know if it’s accurate anymore,” Melton says. “From a health care standpoint, it’s critical for us to understand what we’re dealing with, and to be able to provide people with adequate access to care. The goal of this registry is to provide us with numbers we can rely on.”
Valuable information for researchers and industry
The LLPR collects patient data from hospitals and clinics regarding limb preservation and amputation procedures being performed in hospitals; patient demographic information including comorbidities, clinical treatments received, length of stay, payers, and service locations; and details on prosthetic fittings and the providers of those prosthetic devices.
“We also want to be able to track patient-reported outcomes, which is a critical aspect of providing quality care,” Melton says.
The de-identified data in the registry can be used by clinicians and researchers working in surgery, wound care, physical and rehabilitation medicine, biomechanics, physical therapy, occupational therapy, prosthetics, orthotics, podiatry, and psychiatry, as well as engineers, industrial scientists, and manufacturers who are working to create improved prosthetic and orthotic devices.
“For example, if we want to benchmark surgical procedures that are performed at our institution, we’ll be able to query a research question against the registry data and know where we fall from a standard of care perspective,” Melton says. “A prosthetic provider may want to look at a certain prosthetic component, such as a microprocessor knee or a specific type of prosthetic foot, to find out how often it’s being prescribed and how it improves the function of a person with an amputation who is fit with the prosthesis.”
In the long term, the data will help health care providers, patients, and families, all of whom need up-to-date, reliable information and resources, Melton says. Health economists, public regulatory agencies, policymakers, advocacy groups, and payer organizations such as Medicare, Medicaid, and health plan providers, also benefit from the data.
A growing problem
The LLPR is funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, the Department of Health and Human Services, and the Department of Defense, illustrating just how large of a challenge limb loss has become.
“The number that we cite, based on outdated literature, is that by 2050 there will be 4 million people living with limb loss in our country,” Melton says. “Eighty percent of those are due to diabetes or vascular problems, and the remaining 20% of amputees are made up of other causes including trauma, cancer, infection or congenital — people who are born with limb differences. The goal of the registry is to provide updated, current, accurate information about these patients to provide the best care and treatment.”
The LLPR will help medical professionals define what resources are going to be needed for this patient population, whether that’s preventive care, access to care, or best practices, Melton says.
“The standard of care for an older patient population group with vascular problems may not be applicable to the young, healthy population losing limbs from trauma,” she says. “With a registry like this, we have an opportunity to define better systems of care to restoring limbs and determine which patients benefit from these treatment options.”
Last year, Melton was recruited by the University of Colorado to join the CU Limb Restoration Program with Jason Stoneback, MD. She continues to serve as science chair of the External Advisory Panel for the LLPR and says being the first program in the country to be part of the LLPR sets CU apart as a leader in patient care for people with amputations.
“When I ask other providers around the country to join the registry, I can say, ‘We’ve done it here at the University of Colorado, and I really hope that you will participate as well,’” she says. “We want to be a resource and an example to motivate them to get their systems to participate. By working together, we advance the care of this patient population.”