NIH collaborates on national limb loss registry

Woman in field gesturing to her prosthetic leg

Limb loss is an important medical issue, especially for U.S. military service members. Now the first national database on limb loss is planning to open in 2020—with help from NIH.

The Limb Loss and Preservation Registry will help the medical and military communities better understand amputee challenges and needs. Ultimately it aims to improve the care of those who have experienced limb loss.

NIH is partnering with the Department of Defense (DoD) on the project, which will be led by the Mayo Clinic, an academic medical center.

“The Limb Loss and Preservation Registry addresses a significant public health knowledge gap,” says Alison Cernich, Ph.D. She is director of the National Center for Medical Rehabilitation Research within NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD).

NICHD is leading the limb loss registry effort within NIH.

Understanding limb loss

Limb loss can happen for many reasons. Those include birth defects, surgical procedures, or traumatic injury, such as in military combat.

Researchers studying diseases and conditions that can contribute to limb loss, such as vascular disease and diabetes, will have access to the registry, says Dr. Cernich. Researchers will be able to sort the data by age, gender, and type of limb loss.

Information from the database will help:

  • Prevent limb loss
  • Improve amputation surgeries
  • Refine rehabilitation approach
  • Improve devices for people with limb loss

Partnering to understand limb loss

NIH is partnering with the DoD on developing the registry in an effort to improve the quality of care for active military members and veterans, along with other limb loss patients.

“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 says.

To find out more about limb loss, visit MedlinePlus.

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