A new database supported by the National Institutes of Health (NIH) and the Department of Defense (DOD) aims to establish the number of people in the United States 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 be the first national registry of people who have lost limbs 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,” said Alison Cernich, PhD, director of the National Center for Medical Rehabilitation Research (NCMRR) within NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). “The information housed in this database will be vital to preventing limb loss, improving amputation surgeries, refining rehabilitation approaches, and guiding the development of devices for people with limb loss.”
NICHD has awarded a five-year contract to the Mayo Clinic to develop and launch the registry. Registry data will include electronic health records of U.S. adults and children. Researchers studying diseases and conditions that can contribute to limb loss will have access to the registry.
“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,” Cernich said.