Limb Loss and Preservation Registry

The National Center for Medical Rehabilitation Research, within the National Institutes of Health, is partnering with the Department of Defense (DoD) to fund the creation of a clinical registry for amputation and amputation prevention, the Limb Loss and Preservation Registry (LLPR). Mayo Clinic has received the competitive contract to create the LLPR. The goal is to collect data so this growing field of research and treatment can be based on reliable evidence to make informed analytical decisions.

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Limb Loss and Preservation Registry (LLPR) FAQs

What is the Limb Loss and Preservation Registry? 

• The Limb Loss and Preservation Registry (LLPR) is a national program to improve the quality, safety, and effectiveness of treatment and preservation of limb loss. 
• The LLPR is a centralized data warehouse designed to collect relevant patient data and perform analyses to improve the quality of care and patient outcomes.
• The project is a sole source contract to May Clinic funded in whole or part with Federal funds from the Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, Department of Health and Human Services with the Department of Defense.

What is the long-term vision for the Registry? 
Ideally, five years from now, the LLPR data set will help patients make decisions based on their specific circumstances. The data analytics will forecast probabilities on what is possible given a patient's functional status. The LLPR will provide education and generate knowledge and discovery. 

Who has oversight for the Registry? 
Registry oversight includes a committee with members from the National Institutes of Health, the Department of Defense, the Veterans Administration, the Center for Medicare and Medicaid Services, and the Food and Drug Administration. Mayo Clinic's principal investigator, Kenton Kaufman, Ph.D., P.E., will lead the project with a team of subject matter experts, including subcontracts with the American Academy of Orthopaedic Surgeons, Prometheus Research, and the Thought Leadership & Innovation Foundation. 

Mayo Clinic will also receive guidance from an independent panel of specialists with diverse expertise, ranging from medicine and science to manufacturing and defense. These individuals will act as champions for the LLPR providing influence and communication within and between the various professional organizations and societies they represent. 

Who are the participants (or stakeholders) in the Registry? 
The Registry is a multi-stakeholder model including a broad group of participants: patients, providers (OT, PT, physicians, prosthetists etc.), care sites (hospitals, clinics wound centers), payors, manufacturers, supplies, and regulatory agencies. 

What is the value to participants? 
The Registry's primary value is to enhance treatment and care for limb preservation and patients with limb loss. In addition, the multi-stakeholder model highlights secondary value streams from the LLPR data will serve to: 

• Create a unified voice for all stakeholders uniting together for a common purpose
• Identify and support underserved populations
• Drive enhanced reimbursements
• Validate design concepts, test new devices, and accelerate time to market
• Offer a timely and direct feedback channel about how product works for the patient
• Provide key data needs: billing data, component device, objective non-biased measures of patient outcomes
• Provide a tool for education and self advocacy
• Generate real-time outcomes - the 'lived experience'
• Provide data points for evidence-based medicine and aftercare:
  • Validate providers belief in how to care for patient and how to inform patient expectations
  • Risk factor modeling
  • Anticipate clinical trajectory
  • Optimize resources - helping understand who needs what device
  • Inform standards of care -i.e., validate surgeon expertise, objective data on provider performance /outcomes

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ELEMENTS OF THE DATA COLLECTED

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