Limb Loss and Preservation Registry
Mayo Clinic has launched a five-year program to establish the Limb Loss and Preservation Registry, the first national database of its kind to collect information to improve prevention, treatment and rehabilitation efforts related to limb loss.
The goal of the registry is to bring together validated, detailed medical information so that it can be analyzed and applied to evidence-based treatment to make a better future for patients with limb loss.
More than 2 million people in the United States have lost a limb — and the number continues to grow — whether because of a traumatic injury, a disease such as diabetes, a medical condition or a congenital amputation.
Registry data is being collected on:
- Amputations and hospitalizations
- Prosthetic fittings and providers
- Patient-reported outcomes
- Patient function
Mayo Clinic is developing analytical tools to provide dashboards and statistical reports from the data, which can be used to improve practice standards around the country. Deidentified data in the registry can be used by physicians and researchers in numerous disciplines, including surgery, wound care, physical and rehabilitation medicine, biomechanics, physical therapy, occupational therapy, prosthetics, orthotics, podiatry, and psychiatry. The data also can help engineers, industrial scientists and manufacturers create improved prosthetic devices.
In the long term, the registry is expected to help health care providers, patients and families with up-to-date, reliable information and resources about amputation and limb loss.
The data are collected and analyzed under the highest security. Information is stored in a secure repository that meets or exceeds federal requirements. Full informed consent protocols are in place for any resulting research studies.
The registry is supported by a partnership between the Department of Defense and the National Institutes of Health (NIH). The NIH's Eunice Kennedy Shriver National Institute of Child Health and Human Development awarded Mayo Clinic a five-year, $5 million contract to develop and launch the registry. Numerous federal agencies are involved in registry oversight and guidance.
In addition, Mayo Clinic is working with the American Joint Replacement Registry of the American Academy of Orthopaedic Surgeons, the Thought Leadership & Innovation Foundation, and the Amputee Coalition to encourage participation and gather vital information.