Federal Partners Developing Limb-Loss Registry

NIH and DoD team up to establish a new limb-loss database to record and assess patient needs.


The NIH and DoD are working on a new database that aims to establish the number of people in the US living with limb loss and to provide insight on their challenges and needs.

The Limb Loss and Preservation Registry, expected to be operational in 2020, will address a “significant public health knowledge gap,” said Dr. Alison Cernich, director of the National Center for Medical Rehabilitation Research. She says the information housed in the database will be vital to preventing limb loss, improving amputation surgeries, refining rehabilitation approaches, and guiding the development of devices for people who have lost limbs. Researchers will be able to sort the data by age, gender, and type of limb loss.

The National Institute of Child Health and Human Development has awarded a 5-year contract, capped at $5 million, to the Mayo Clinic to develop and launch the registry.

The NIH and DoD chose to join resources because there are not enough amputations within the DoD alone to provide a suitable sample for statistically valid conclusions, Dr. Cernich said. Moreover, data available from the DoD and the VA do not include service members who leave the military and seek care in the private sector. Cernich says the partnership between federal agencies will allow them to collect data that will “inform research and improve the lives of all citizens coping with limb loss.”

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