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Limb Loss and Preservation Registry (LLPR) Transforms Care Through Data and Insights | By Shawn Murphy, Vice President, Thought Leadership & Innovation Foundation (TLI)

The Limb Loss and Preservation Registry (LLPR) represents a pivotal development in patient care. It stands as the first collaborative database that unites hospital and health systems, provider organizations such as Accountable Care Organizations (ACOs), Integrated Delivery Networks (IDNs) and orthotic/prosthetic (O&P) practices, focusing on both upper and lower extremity acquired and congenital limb differences, as well as limb preservation populations. This collective effort has the potential to drive substantial advancements in patient outcomes, treatment effectiveness and care quality.

The Registry is expected to help health care providers, patients and families with up-to-date, reliable information and resources that impact the lives of those who have suffered limb loss or are dealing with limb differences.

Limb Loss is a Significant Health Issue

It is estimated that more than 2.7 million people live with limb loss or limb difference in the United States, including individuals with amputations of one or more limbs. By 2050, this number is projected to double.

Limb loss can result from various causes, including traumatic injuries and medical conditions such as cancer, diabetes and infections that advance to require surgical amputations. While limb loss can affect people of all ages and demographics, certain groups, such as older adults and individuals with diabetes, are at a higher risk due to age-related vascular problems and complications.

The cost of treating and rehabilitating individuals with limb loss can be substantial, including expenses related to surgeries, prosthetic devices, rehabilitation services and ongoing medical care. Many who have experienced limb loss wear prosthetic devices to regain mobility and functionality. Advances in prosthetic technology have significantly improved the quality of life for many people. It’s important to note that medical procedures and care continue to evolve, with ongoing research, advancements in prosthetic technology and limb preservation and efforts by care providers to improve the overall quality of life for their patients.

Despite the significant personal, and societal impact associated with these challenges, there is little current evidence on effective clinical practices and technologies in this field. The Registry will significantly expand the scope of knowledge about population and the effectiveness of practices and technologies following a limb loss or a limb preservation surgery.

Elevating the Standard of Care Through the LLPR

The LLPR is a national program designed to improve the quality, safety, and effectiveness of treatment and preservation of limb loss. The Registry is supported by a partnership between the Department of Defense and the National Institutes of Health (NIH). The NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development awarded Mayo Clinic a five-year, $5 million contract to develop and launch the Registry. Numerous federal agencies are involved in the Registry oversight and guidance.

After years of intense research and proof-of-concept development, the Thought Leadership & Innovation Foundation (TLI) has partnered with the Mayo Clinic and launched the first national registry for those living with congenital and acquired limb loss and limb difference through the National Institute of Child Health and Human Development (NICHD) and the Department of Defense (DoD). LLPR is the first national Registry of its kind in the United States of its kind to standardize, collect, measure and report patient outcomes relative to limb loss or preservation surgery and post-surgical care and rehabilitation.

The goal of this Registry is to bring together validated, detailed medical information so that it can be analyzed and applied to evidence-based treatment that will create a better future for patients with limb loss and limb difference. Utilizing this data could support the future  prevention of limb loss and improve pre-and post-surgical treatment and rehabilitation efforts for this population.

“The Limb Loss and Preservation Registry addresses a significant public health knowledge gap,” said Dr. Alison Cernich, director of the National Center for Medical Rehabilitation Research (NCMRR) within NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development. “The information housed in this database will be vital to preventing limb loss, improving amputation surgeries, refining rehabilitation approaches and guiding the development of devices for people with limb loss.”

How It Works

The LLPR serves as a centralized data warehouse to collect relevant patient data and perform analyses to improve the quality of care and patient outcomes. Aggregating data from hospitals, O&P practices and provider organizations creates longitudinal care records for patients that have never before been developed or utilized. Data analytics will empower practitioners and clinicians to mobilize patients by engaging them in managing their own care.

Registry data includes:

  • Amputations and hospitalizations
  • Prosthetic fittings and delivery
  • Patient-reported outcomes
  • Patient function

This data is collected and analyzed under the highest security. Information is stored in a secure repository that meets or exceeds federal requirements. Fully informed consent protocols are in place for any resulting research studies. By using this powerful tool, healthcare professionals, manufacturers, and patients embark on a new era of personalized care, fueled by comprehensive data transformed into information to propel progress in the O&P industry.

Why This Matters

A registry can be a powerful tool to support research and improve the quality of care for its target population by providing a framework to assimilate data from multiple sources into a single, meaningful resource. The importance of the LLPR and its role to alleviate significant data gaps will increase access to care and improve care models related to the acquired and congenital limb loss and limb difference population in the U.S.

This Registry could potentially serve various purposes, such as:

Research: Collecting data on individuals who have experienced limb loss or are at risk of limb loss can provide valuable insights into the causes, treatments, and outcomes associated with limb loss. Researchers can use this information to develop better interventions and prosthetic technologies.

Clinical Care: A registry could help healthcare providers track patients with limb loss or limb preservation needs, ensuring they receive appropriate care and follow-up.

Advocacy: Such a registry might also be used for advocacy and awareness-raising efforts, helping organizations and individuals advocate for improved services, policies and resources for those affected by limb loss.

Quality Improvement: Healthcare facilities and providers could use registry data to assess and improve the quality of care they offer to patients with limb loss or limb preservation needs.Enhanced Patient Safety: The LLPR is designed to elevate patient safety by providing healthcare providers with comprehensive data-driven insights. This empowers them to offer safer and more effective treatments to their patients.

Addressing Critical Data Gaps: The LLPR plays a crucial role in filling essential data gaps, increasing access to care, and enhancing care models. By joining this collaborative effort, healthcare providers actively contribute to the development of improved treatments and care methodologies.

Collaboration is Shaping the Future of Limb Care

The initial impact of the LLPR is resonating throughout the limb difference community and is advancing with significant momentum. By leveraging cutting-edge technology and data exchange of best practices, LLPR is expected to achieve better healthcare outcomes for millions of patients.

The subscription pricing model is set to commence on January 1, 2024, with an added incentive for practices that sign up on or before October 31, 2023, wherein the set-up fee will be waived. Financial support from industry leaders incentivizes participation in LLPR initiatives. Cailor Fleming, an insurance provider, is extending discounts of 5-15% on premiums for P&O providers participating in TLI programs. Additionally, P&O providers who sign up with Nymbl Systems as their electronic health record (EHR) solution and the LLPR within the same 90-day period will receive an additional 10% discount on their upfront costs on Nymbl Systems.

Collaboration with the LLPR is instrumental in shaping the future of limb care. Through combined strengths and insights, this initiative is equipping stakeholders with a powerful tool to benchmark and analyze limb loss data, promoting equitable access and innovative approaches to quality care.

About The Author

Shawn Murphy, Vice President, Thought Leadership & Innovation Foundation (TLI), is an experienced leader and certified Project Management Professional with an impressive history of driving organizational growth in information technology and services industries. Passionate about improving the human condition, she implements innovative ideas to improve patient care and education within communities. With her leadership and guidance, she has managed health information technology and financial management programs for the Department of Defense (DoD), the Department of Veterans Affairs (VA), National Institutes of Health (NIH) and commercial enterprises. Shawn’s work in commercial satellite communications, telecommunications, clinical support systems, medical logistics, and financial industries is testimony to her ability to leverage new, advanced technologies. A consummate project management specialist, she uses best practices to implement enterprise-level business process transformation, manage inter-agency systems interoperability, cybersecurity and software integration programs.

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