Mayo Clinic Partners with TLI to Develop a National Registry for Limb Loss and Limb Preservation Surgeries

Advancing a Legacy of Improving Health and Quality of Life

TLI is grounded in a commitment to share its expertise in transformative change that impacts health, education and economic empowerment.

So, when the Mayo Clinic awarded TLI a subcontract to assist in the development of a Limb Loss and Preservation Registry for the National Institute of Child Health and Human Development (NICHD), the entire TLI organization was extremely gratified to participate in a project that could lead to prevention of limb loss, improve amputation surgeries, refine rehabilitation approaches and guide the development of devices for people with limb loss.

Expected to become operational in 2020, the Registry aims to establish the number of people in the United States living with limb loss and to provide insight on their challenges and needs. This data repository is being hailed as the first national registry of people – including adults and children -- who have lost limbs. It is representative of the U.S. population, both demographically and geographically, and promises to collect data that will improve prevention, treatment and rehabilitation efforts for this population.

“The Limb Loss and Preservation Registry addresses a significant public health knowledge gap.”

Dr. Alison Cernich,

Director of the National Center for Medical Rehabilitation Research (NCMRR) within NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development

NOTE: NCMRR leads NIH efforts to study recovery and rehabilitation after limb loss. NICHD has awarded a five-year contract, capped at $5 million, to the Mayo Clinic to develop and launch the Registry.

The database will be made available to researchers studying medical conditions that contribute to limb loss, such as diabetes and vascular disease. In addition, the research community will be able to analyze the data by age, gender and type of limb loss or preservation surgery.

A Boost from DoD and NIH

Supported by the National Institutes of Health (NIH) and the Department of Defense (DoD), the Registry is expected to help improve the quality of care for active military personnel and veterans, highlighting the ongoing coordination and collaboration among federal partners in rehabilitation research.

The Registry data and subsequent research will ultimately help the NIH and DOD make the best decisions about research gaps in limb loss and areas that need funding to improve the quality of life for all people coping with limb loss.

“The joint effort between federal agencies allows us to collect data that will inform research and improve the lives of all citizens coping with limb loss,” ---- Dr. Cernich.

Of Vital Importance

Why is this work so essential? The public tends to only take interest in research about limb loss and prostheses when major conflicts or wars occur or when, for instance, they read a story about a wounded soldier or amputee participating in the Olympics.

Along with our colleagues at Mayo Clinic and other participating organizations, we hope to shine a more sustained light on the impact that mobility and socialization issues can have on those who have experienced limb loss. After years of intense and rewarding work, we are truly gratified with the progress we’ve helped to foster, creating a Registry that is designed to standardize, measure and report patient outcomes relative to limb loss or preservation surgery.

This robust repository of information will support evidence-based decision making, enhance health care delivery and establish and disseminates best practices in this field.

Currently, we continue to work with the team to determine the data elements, number of potential participants, security requirements, data entry and storage, data access and permissions, reporting requirements and analytics.

The work we’ve done has been an honor and a great responsibility, and we are proud to be part of this worthy collaborative!

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