Today the size of the acquired and congenital limb difference population in the United States remains uncertain, with estimates ranging from two to four million. The absence of reliable data for those with limb loss and limb difference has hindered efforts to provide standard comprehensive care, affecting the mobility and quality of life for patients.
The Limb Loss and Preservation Registry (LLPR) has been created to collect data nationally for the acquired and congenital limb difference and limb preservation populations—including both upper and lower extremities. The LLPR is a collaborative data hub and is accumulating valuable data—integrating hospital-, prosthetist-, orthotist-, and patient-reported outcomes data to produce a comprehensive view of patient care. As a collaborative data hub, the LLPR provides hospitals and O&P providers the opportunity to work together and revolutionizes management of patient care for healthcare professionals, insurance companies, and patients alike.
Michael Choo, MD, Chief Medical Officer and SVP of Workers Compensation for Paradigm, emphasizes the critical demand the LLPR addresses in O&P: “There’s a lot of lack of knowledge about the industry, about the condition, and about the care management and the intervention that goes into this field…. What we do need is a single source of truth so we can mine the data, get some insights that will be consistent, and to help the clinicians understand what the best care management track would be and what the best outcomes can be attained.”
James Ficke, MD, Professor of Orthopaedic Surgery at Johns Hopkins University, recalls the origins of the LLPR: “We sat in Washington DC in December 2001 and built the playbook on how to rehab amputee patients from our war. And with that, we started essentially from scratch.”
Jeffrey Brandt, CPO, expresses concern over the gaps in existing O&P data. “We’re citing 25 years ago data…. There’s 2 million amputees, there’s 2.1, there’s 4 million. How many get legs, arms? How many don’t? We just don’t know what we should know about our patients.”
Data analytics from the LLPR empowers practitioners to mobilize patients by engaging them in managing their own care. Peter Thomas, Managing Partner of Powers Law Firm, shares his personal journey of adaptation. “At age ten, I was in a car accident and lost my legs below the knees and went to a rehabilitation hospital for about two and a half months, learned how to walk on prosthetic limbs. I’ve had 14 sets of artificial limbs over 49 years. Two years ago, I got a new set of artificial limbs, and there’s a new mechanism called vacuum suspension. There’s a negative pressure or a vacuum that’s formed. I was very reluctant to try that because of my particular situation. So my prosthetist waited about five or six years to present that to me and worked with other patients…. I tried it. I love it. That’s a microcosm of what the registry can do.”
Similarly, Eve Lee, Executive Director of the American Orthotic and Prosthetic Association, stresses: “When you restore mobility for even one patient, you actually get them up and mobile and fully participating in their lives, in their communities, in their families, in their work life, so that you have full members of society able to reach their full potential.”
The Limb Loss and Preservation Registry is a beacon of hope, developed and supported by the US Department of Defense and the Eunice Kennedy Shriver National Institute of Child Health and Human Development. Using this powerful tool, healthcare professionals, insurance companies, 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.
