Creation of a Limb Loss and Preservation Registry for Improving the Quality of Patient Care in the United States

Objective

To describe the development of a national Limb Loss and Preservation Registry (LLPR) designed to collect, standardize, and report patient outcomes data on limb loss and limb difference in the United States.

Design

Clinical Data Registry

Setting

The LLPR was developed through consensus of key stakeholders from academia, industry, patient advocacy, and payers as well as the available scientific evidence. Data are collected from multiple sources, including hospitals, providers, and patients.

Participants

Data are collected from all 50 states.

Interventions

Not applicable.

Main Outcome Measures

More than 1100 trigger codes are used to identify patients who have limb difference or have received a limb preservation or amputation procedure. Once a patient is identified, all subsequent episodes of care are collected for the life of the patient. An integrated model is used for collecting, validating, cleaning, transforming, aggregating, and storing the data received from all sources. The information contained is then provided in a thorough and easily comprehensible manner.

Results

To date, the LLPR has captured data from >435,000 patients and >11.5 million episodes of care.

Conclusions

The LLPR creates opportunities to apply large-data analytical methodologies to provides caregivers, researchers, manufacturers, payers, and policy makers the tools needed to improve the quality of clinical care, quantify patient-centric outcomes, develop clinical practice guidelines, assess patient quality of life, identify appropriate technology, and guide creation of national policies to allocate scarce sources appropriately.