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Limb Loss and Preservation Registry Begins to Take Shape

At the most recent AOPA National Assembly in San Diego, Kent Kaufman, Principal Investigator for the Limb Loss and Preservation Registry (LLPR) sough input from the O&P profession on his efforts to design and implement the registry from scratch. Earlier in September, Dr. Kaufman and his registry team convened the second meeting of a set of external stakeholders, established to provide advice to the registry team.

The two-day meeting was hosted by the world-famous Mayo Clinic in Rochester, Minnesota. A wide range of topics was discussed but the ultimate message was clear. In order for the LLPR to realize its promise, the entire O&P profession must embrace it, participate in it, and actively use it to help make clinical decisions and advise patients. As a profession, we have an incredible opportunity now that the Department of Defense and the National Institutes of Health have agreed to co-fund the development of this quality improvement registry for a five-year period. Collectively, we must succeed not only in developing a registry that offers real value to participants, but is sustainable once the federal grant money dries up. But how, exactly, can O&P clinicians, manufacturers, and patients help the registry succeed?

A quality improvement registry is a longitudinal database of clinical information on certain types of patients which is primarily used to improve care. Once developed, the goal is to have health care providers (and others) use the database to forecast pathways of care and expected outcomes; develop and improve clinical practice guidelines; obtain reliable incidence and prevalence data, and aid patients in making evidence-based decisions about their health care choices.

Phase I of the registry involves the selection of three beta sites that will collect a limited set of data, primarily from existing electronic data sources, and begin the process of building the database of clinical information on patients who seek to preserve their limb after illness or injury, or who have lost their limb, whether or not they seek prosthetic care. In fact, existing data suggests that between 50% and 70% of individuals with limb loss do not use prostheses, a phenomenon the registry should be able to help explain, or improve.

There will be only limited opportunities for manufacturers, O&P clinicians and patients to participate in phase I of the registry, which should last about one year. Phase II will engage the O&P community to a much greater extent. For instance, it will be important to work with manufacturers to better identify specific O&P components to match them with patient reported O&P outcomes. Practitioners will be key participants in collecting clinical data on limb loss and preservation patients as well as encouraging patients to fill out patient-reported outcome measures.

Demonstrating the value of participating in this endeavor is the real challenge. Most data will be collected through existing sources, such as the electronic medical record systems already in use throughout the country (although those relationships still need to be negotiated). The goal is to spare practitioners from inputting specific data on each patient for the purposes of the registry only. Another goal is to facilitate easy patient reporting of outcome data without erecting barriers to doing so. Much more information will be forthcoming once the registry begins to hit its stride, but everyone in the O&P community has a role to play to make the LLPR a success, and NAAOP encourages everyone to do just that.

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