Shirley Ryan AbilityLab recently signed on to take part in the National Limb Loss and Preservation Registry (LLPR), a new project aimed at advancing treatments and outcomes for patients with congenital and acquired limb loss and limb difference.
Under the LLPR, Shirley Ryan AbilityLab and other organizations will collect universal data elements that subsequently link hospital-, provider- and patient-reported outcomes over time.
“This quality improvement registry will collect national data on those with congenital and acquired limb loss,” said Levi Hargrove, PhD, scientific chair, Regenstein Center for Bionic Medicine, Shirley Ryan AbilityLab, “Researchers and clinicians will then be able to use that data to ensure that future amputation research and clinical and therapeutic treatments are based on reliable evidence to make informed analytical decisions.”
The LLPR represents key stakeholders including healthcare providers, researchers, regulators, manufacturers, payers, and industry and patient groups. It is currently being led by the Mayo Clinic and is under contract with the National Institutes of Health (NIH).