In November 2021, eight leading nonprofit and corporate organizations have formed the National TBI Registry Coalition (NTRC): Abbott, American Congress of Rehabilitation Medicine, American College of Radiology, International Brain Injury Association, National Football League Players Association, North American Brain Injury Society, Philips, and SanBio. As leaders in the TBI community, NTRC member organizations are working together to promote public awareness about individuals and families impacted by TBI.
Only 14 states have some form of a registry for TBI. This is a decentralized system in which certain states have developed and managed their own registries. Most individuals with a TBI live in states without a registry and therefore may not be recorded in a registry or database. A limited number of registries in a select number of states creates a geographic disparity in care for patients. Thus, individuals with brain injury, do not have equal access to information about treatments and are not all included in the design and evaluation of programs and research to further benefit the community.
This coalition seeks to join industry partners, nonprofit organizations, and other advocacy groups to amplify collective voices around a common goal to improve reporting and equalizing access to services and therapies for individuals living with a brain injury.