The Limb Loss and Preservation Registry (LLPR) has reached a significant milestone: more than 500,000 patients are now represented, with data from over 15 million clinical care visits collected across the continuum of limb-loss and limb preservation care.
This achievement reflects one of the largest and most comprehensive collections of real-world data focused on people living with limb loss and limb difference in the United States. As the Registry continues to grow, it is increasingly positioned as a national resource for understanding patient outcomes, care patterns, and long-term functional and quality-of-life trends.
A Longitudinal View of Limb Care
Unlike point-in-time studies, the LLPR was designed to capture longitudinal clinical and patient-reported data spanning prevention, limb preservation, amputation, prosthetic and orthotic care, rehabilitation, and long-term follow-up. Each care encounter contributes to a richer picture of how patients experience care over time—and how interventions impact function, mobility, and overall well-being.
The scale of the Registry enables analysis across care settings, provider types, etiologies, and patient demographics, offering insights that were previously difficult or impossible to generate at a national level.
Advancing Evidence-Based Practice in O&P
For the O&P community, the Registry’s growth represents more than a numeric milestone. It signals increasing momentum toward evidence-informed decision-making grounded in real-world outcomes.
As data volume expands, the LLPR supports:
- Comparative effectiveness research
- Better understanding of functional outcomes across device types
- Identification of variation in care delivery
- Stronger alignment between clinical goals and patient-reported experience
These insights have the potential to inform clinical practice, support quality improvement initiatives, and strengthen the evidence base used in coverage, reimbursement, and policy discussions.
Expanding Access to Patient-Reported Outcomes and Elevating the Patient Voice
Central to the Registry’s mission is ensuring that patient voice and lived experience are represented alongside the clinical data that is already being collected.
Building on its commitment to capturing real-world experience, the Limb Loss and Preservation Registry will soon begin collecting patient-reported outcomes directly from individuals living with limb loss and limb difference through a new, online survey tool. This secure portal will be available to the general population, allowing people to contribute outcomes data regardless of where they receive care.
Patient-reported outcomes play a critical role in capturing what matters most to individuals living with limb loss or limb difference—mobility, independence, pain, participation, and quality of life.
By pairing clinical encounters with patient-reported data at scale, the Registry helps shift the conversation from “what was delivered” to “what impact did care actually have.”
Looking Ahead
With more than half a million patients represented and millions of care encounters captured, the Limb Loss and Preservation Registry is entering a new phase—one focused on translating data into actionable insights for clinicians, researchers, payers, and policymakers.
As participation continues to grow, the Registry is expected to play an increasingly important role in shaping the future of limb preservation, amputation care, and orthotic and prosthetic services—grounded in evidence, informed by outcomes, and centered on the people whose lives are most affected.
Join the Registry and Help Shape the Future of Limb Care
Orthotists & Prosthetists play a critical role in advancing outcomes-driven care for people living with limb loss and limb difference. By participating in the Limb Loss and Preservation Registry, O&P providers can contribute real-world clinical data that helps strengthen the evidence base for patient care, supports quality improvement, and amplifies the patient voice at a national level. As the Registry continues to grow, broad participation from the prosthetics community is essential to ensuring that outcomes reflect the full scope of care being delivered. Prosthetists interested in joining the Registry and contributing data are encouraged to learn more and get involved. Visit the LLPR website at llpr.org.
Shawn Murphy is the executive director of the Limb Loss and Preservation Registry. She can be contacted at shawn.murphy@thoughtfoundation.org.
