If you attended the Amputee Coalition’s 2023 National Conference you may already know about the Limb Loss and Prevention Registry (LLPR). Kathie Bernhardt, Mayo Clinic’s Project Manager for the LLPR led the session titled “A National Effort to Improve Care for Individuals with Limb Loss: The Limb Loss and Preservation Registry.” Certified Peer Visitor Dr. Ed Nathan was featured as a speaker.
The need for this is starkly illustrated through the lack of available current data. Currently, there is no data from the Centers for Disease Control (CDC), no data from Agency for Healthcare Research and Quality (AHRQ), and no national database sponsored by any research organization.
This means that there is extremely limited credible data on limb loss, limb preservation, or limb difference in the United States, and no data on incidence, prevalence, cost, or quality of life. This inhibits policy creation to address the overall health and wellness of the limb loss and limb difference community.
What is the Limb Loss and Preservation Registry (LLPR)?
The LLPR is the first hospital systems and prosthetic/orthotic facilities collaborative database to focus on the acquired and congenital limb difference, as well as, limb preservation, populations.
- The Registry addresses a substantial public health knowledge gap for a population that has no current reliable data repository.
- The information housed in the Registry will help to prevent limb loss, influence clinical practice guidelines, refine rehabilitation approaches, and guide development of more optimal care plans for people living with limb loss.
- As a collaborative data hub, the Registry collects data from hospital and O&P EHR systems and other outcomes measuring systems, to create a longitudinal view of a patient’s care journey.
- This dataset will be made available to researchers studying medical conditions that contribute to limb loss, such as diabetes and vascular disease. It will enhance their functionality and quality of life.
The Registry is a sole source contract to Mayo 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 (NIH), Department of Health and Human Services with the Department of Defense (DOD). Gathering data from hospitals, a variety of health care providers, and the limb loss and limb difference community directly; two different data sets are being collected and examined:
- Amputation and hospitalization – This includes basic patient information, amputation information, facility and insurance information, as well as specifics regarding patient encounters (co-morbidities, Z codes, etc.)
- Specifics regarding provider and prosthetic fitting are another identified dataset. This includes information about amputation side and level, clinic location, activity level, as well as types (hip joint, BK pylon, socket design, etc.)
Since the Registry launched there are currently over 260,000 patients who have been counted from all 50 states, Washington DC, Canada, Mexico, the Virgin Islands, and Puerto Rico.
What Can You Do?
There is still an opportunity to be counted and contribute to this undertaking by talking to your provider and asking if they’ve joined the Registry. If they haven’t yet, make sure to let them know why it is so important. The Limb Loss and Preservation Registry makes critical data available to hospitals, clinics and individual providers, manufacturers, payers, scientists, clinical researchers, and policymakers. The Registry is also available to assist patients with any follow up conversations with your provider at the hospital or O&P office.
This effort ultimately is about providing information that drives change. Having more evidence-based care that can maximize function and life quality of life; setting more realistic goals for device delivery and fit; and a better understanding of gaps in care due to personal economics, social support, or geography.
View the list below to see if your current provider participates:
Hospital Providers
- Atrium Health
- Mayo Clinic
- Shirley Ryan AbilityLab
- University of Alabama at Birmingham Medicine
- University of Colorado Health
- University of Michigan Health
- UTHealth Houston
Prosthetic & Orthotic Providers
- Agile Orthopedics
- Arise Orthotics & Prosthetics
- Bionic P & O Group
- Clark & Associates Orthotics & Prosthetics, Inc.
- Dankmeyer, Inc.
- Dynamic by DESIGN
- Horton’s Orthotics & Prosthetics
- Kenney Orthopedics Prosthetics & Orthotics
- Nevada Orthotics & Prosthetics, Inc.
- NuTech Institute
- Optimus Prosthetics
- Peninsula Prosthetics
- Prosthetic Center of Excellence
- Quantum Prosthetics & Orthotics
- Shirley Ryan AbilityLab
- Stokosa Prosthetic Clinic
- Union Orthotics & Prosthetics Co.
- University of Michigan Health
- Victory Orthotics & Prosthetics
- Wheeler Orthotics & Prosthetics
Visit the LLPR’s website if you are interested in learning more about how the Registry can give your providers a 360-degree view of your care history.