TLI partnership with Mayo Clinic to develop a Limb Loss and Preservation Registry (Registry) for the National Institute of Child Health and Human Development (NICHD) generates support, interest and palpable enthusiasm during Amputee Coalition’s 2019 National Conference in San Antonio, Texas
By supporting the Mayo Clinic participation at the recent conference, the TLI team had the opportunity to share its expertise and goals for the Registry: to establish the number of people in the United States living with limb loss and provide insight on their challenges in order to help improve quality of care for civilian, active military personnel and veterans.
Together with our colleagues at the Mayo Clinic, we conducted focus groups for orthotics and prosthetics manufacturers, amputees and a variety of care providers, including prosthetists, orthotists, physiatrists, registered nurses, physical therapists and case managers.
With record high conference attendance, 1300+ people from the limb loss and limb difference community benefitted from educational and motivational sessions, hands-on clinics and introductions to companies that are active in this space.
The Registry’s Value
Throughout the conference, we heard considerable feedback that the Registry will bring value to this community and is regarded as a powerful opportunity to collect data that will improve quality care and functional outcomes of care.
Perhaps the Registry’s greatest value is that it will raise awareness about the challenges this community faces in a more consistent way, rather than simply when major conflicts or wars occur. Expected to become operational in 2020, the Registry is supported by the National Institutes of Health (NIH) and Department of Defense (DoD), and is now building interest across the limb loss and limb difference community.
Communicating the Value
Our goal is to get out the message and shine a light on the impact that mobility and socialization issues can have on those who have experienced limb loss.
We are grateful to have had the opportunity to participate at the Amputee Coalition conference. Now it’s time to take this mission to the next level, and continue our work helping to create a Registry that is designed to standardize, measure and report patient outcomes relative to limb loss or preservation surgery.
It is a true honor to support the Mayo Clinic and we are very proud of this collaboration. If you share and believe in our Mission, click here to Donate or Partner with TLI.