Kenton Kaufman joined us at the 2022 National Conference to talk about the current national effort to create a Limb Loss and Preservation Registry.
The need for this is starkly illustrated through the lack of available current data. If you weren’t aware, there is:
- No data from the Centers for Disease Control (CDC)
- No data from Agency for Healthcare Research and Quality (AHRQ)
- No national database sponsored by any research organization.
This means that there is extremely limited credible data on limb loss, limb preservation, or limb difference in the US, and no data on incidence, prevalence, cost, or quality of life. This inhibits policy creation to address the overall health and wellness of the limb loss and limb difference community.
The registry is possible through a joint grant from NIH and DoD. Gathering data from hospitals, a variety of health care providers, and the limb loss and limb difference community directly; four different data sets are being collected and examined:
- The obvious place to start is to collect data on amputation and hospitalization. This includes basic patient information, amputation information, facility and insurance information, as well as specifics regarding patient encounters (co-morbidities, Z codes, etc.)
- Specifics regarding provider and prosthetic fitting are another identified dataset. This includes information about amputation side and level, clinic location, activity level, as well as types (hip joint, BK pylon, socket design, etc.)
- Patients are both stakeholders and a resource for this project so it’s important to reflect back to the community what they are saying. For that reason, there is a data subset for patient-reported outcomes and measures. In this effort, the data collected is about understanding mobility and functionality, socket comfort, quality of life indicators, and falls.
- Lastly, there are objective functional outcomes to collect data on that will provide insights from wearable devices and sensors. This data is cloud-based and has real-world evidence.
There are currently over 37,000 registrants counted within the registry. There is still an opportunity to be counted and contribute to this undertaking. The Limb Loss and Preservation registry makes critical data available to patients, hospitals, clinics and individual providers, manufacturers, payers, scientists, clinical researchers, and policymakers.
This effort ultimately is about providing information that drives change. Having more evidence-based care that can maximize function and life quality of life; setting more realistic goals for device delivery and fit; and a better understanding of gaps in care due to personal economics, social support, or geography.