Mayo Clinic has received authorization from the Federal Risk and Authorization Management Program to begin operating the Limb Loss and Preservation Registry (LLPR), a national collaborative warehouse for data on people who have lost limbs and may or may not have access to prosthetics. The registry will be the first of its kind in the U.S. Click here to read more.
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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, effectiveness and cost of limb loss treatment and limb loss preservation. Mayo Clinic is undertaking a five-year plan to develop, establish and populate a multi-stakeholder national registry. The LLPR is a centralized data warehouse designed to collect relevant patient data and perform analysis to improve the quality of care and patient outcomes. The project is part of a competitive contract funded by the National Institutes of Health and 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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