O&P professionals understand all too well the growing need for and value of up-to-date, reliable information about limb loss for providers, patients, and families. Data-based resources are vital for patients and their families. Now it’s time to communicate this message more widely and raise awareness of the challenges for limb loss patients across broader public sectors.
Fortunately, the first national registry of people who have lost limbs and undergone preservation procedures, including adults and children, is in development. The goal of the Limb Loss and Preservation Registry is to improve treatment, prosthetics, physical and occupational therapies for this patient population.
Impact of Patient Registry
The registry under development will address a substantial public health knowledge gap and provide information that will be vital to preventing limb loss, improving amputation surgeries, refining rehabilitation approaches, and guiding the future development of prosthetics for people living with limb loss.
For researchers studying medical conditions that contribute to limb loss, such as diabetes and vascular disease, the registry will enable them to analyze the data by factors including age, gender, and type of limb loss surgery to support decision making for long-term care of these patients. The goal is to enhance their functionality and quality of life long-term. Positive outcomes will include patients gaining the ability to better care for themselves, work and participate in recreational activities.
Supports Evidence-based Medical Decisions
Bringing together stakeholders in the scientific community, clinical experts in limb loss, and patient advocacy groups to expand this registry will help develop standard data sets. Measuring and reporting patient data will improve evidence-based decision making. The registry will enhance healthcare delivery and establish and disseminate best practices to build integrated strategies for whole patient care following limb loss.
Thought Leadership and Innovation Partnership
The best thought leadership analyzes big data to innovate, creating roadmaps to healthcare transformation by providing data to ask the right questions. Understanding how to exploit data and technology for the good of the patient enables healthcare providers to determine the right tools to focus more clearly on long-term patient health and outcomes.
The challenge in building a limb loss registry lies in consolidating large quantities of data from a variety of sources and demographics to build a complete picture. Bringing coherence to this vast repository of information is the next challenge, requiring a deep understanding of all stakeholder groups to produce meaningful analysis to drive innovation.
Registries use both top-down and bottom-up analytical strategies to achieve innovations in medical technologies and clinical care standards. They provide potential drivers of change, the starting points for creating prototyping programs. Driving healthcare innovation that looks at the whole patient requires solving systemic, complex challenges in a way that makes a concrete contribution to patient communities and changes their lives in a positive tangible way.
The registry is funded with federal funds from the Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, and the Department of Health and Human Services.
Reed Hartley is the executive director of the Thought Leadership & Innovation Foundation (TLI).
 To learn more about the Limb Loss and Preservation Registry, read “Limb Loss and Preservation Registry Provides Insight Into Challenges And Improves Quality Of Care” in The O&P EDGE and visit the TLI website.
