The National Institutes of Health (NIH) and the Department of Defense (DOD) are developing a database to establish the number of people in the United States living with limb loss as well as 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 amputations or congenital limb loss and will aim 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, MD, 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.”
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, Rochester, Minnesota, to develop and launch the registry. Registry data will include electronic health records of American adults and children. Researchers studying diseases and conditions that can contribute to limb loss, such as vascular disease and diabetes, will have access to the registry, Cernich said. Researchers will also be able to sort the data by age, gender, and type of limb loss.
NIH is partnering with DOD to develop the registry to improve the quality of care for active military personnel, veterans, and civilian members of the population. According to Cernich, amputations are not performed frequently enough within the DOD to provide a sufficiently large sample from which to draw statistically valid conclusions. In addition, data available from DOD and the Department of Veterans Affairs do not include service members who leave the military and seek care in the private sector.
