Evolution of the Veterans Health Administration Spinal Cord Injuries and Disorders (SCI/D) Registry (VHA SCIDR):...

Veterans Health Administration (VHA) maintained a registry of identified and verified cases of US Veterans with spinal cord injuries and disorders (SCI/D) since 1994: VHA SCI/D Registry (VHA SCIDR). Data elements, capture, and storage methods varied over time.

Describe the consolidation and harmonization of historical VHA SCIDR data spanning three decades during its evolution to an automated platform and report population characteristics.

The VHA SCIDR captured data using four distinct acquisition methods over 28 years, including cases of Veterans with SCI/D receiving SCI/D System of Care services, via 25 SCI/D Centers and 122 Spoke Sites throughout the VHA healthcare system. Foundational elements of VHA SCIDR data capture methods, harmonization of data elements with the current automated algorithm, access protocol, and governance structure are described.

From Fiscal Years (FYs) 1994 to 2022, VHA SCIDR identified 52,407 Veterans with traumatic or non-traumatic SCI/D, and 96.95% were male, 56.09% White, 16.57% were Black, 1.23% Asian and Pacific Islander, 0.75% Native American, and 25.36% unknown. Traumatic etiology comprised 53.39% of the sample, while 31.75% were non-traumatic, with 14.87% missing etiology classification. Injury category proportions were 5.19% high tetraplegia, 5.83% low tetraplegia, 5.85% high paraplegia, 7.53% low paraplegia, and 23.35% AIS D, with 52.25% missing or unable to be calculated.

VHA SCIDR is one of the three largest SCI/D registries in North America and is the case-identification platform for VHA SCI/D operations, program evaluation, and research studies. VHA SCIDR is connected to each Veteran's VHA healthcare data, facilitating big data research.