Mayo Clinic to develop Limb Loss and Preservation Registry
The National Institute of Child Health and Human Development has awarded the Mayo Clinic a $5 million contract to develop and launch a Limb Loss and Preservation Registry.
Supported by the National Institutes of Health and the Department of Defense, the database will be the first national registry of people who have lost limbs and will include the electronic health records of U.S. adults and children.
The goal of this data collection effort is to establish the number of Americans living with limb loss and to improve prevention, treatment and rehabilitation activities for this population.
“The Limb Loss and Preservation Registry addresses a significant public health knowledge gap,” says Alison Cernich, director of the National Center for Medical Rehabilitation Research within NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development. “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.”
The registry, which is slated to be operational in 2020, will be made available to researchers studying medical conditions that can 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.
The Limb Loss and Preservation Registry is being developed to demographically and geographically represent the U.S. population. For its part, DoD is partnering with NIH on the database to help improve the quality of care for active military personnel and veterans.
Cernich points out that there aren’t enough amputations within DoD alone to provide a sufficiently large sample from which to draw statistically valid conclusions. Further, she notes that 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.
“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,” concluded Cernich.