Integrating Traumatic Brain Injury Model Systems Data into the Federal Interagency Traumatic Brain Injury Research Informatics Systems

The project has successfully completed the ultimate objective of this project to incorporate data from the Traumatic Brain Injury Model Systems TBIMS into the Federal Interagency Traumatic Brain Injury Research FITBIR Informatics System. Data on 14,159 unique TBIMS cases and 40,245 follow-up assessments collected at 1, 2, 5, 10, 15, 20, and 25 years post-injury were submitted to FITBIR using 15 separate forms which included between 17 and 137 individual data elements. In total, 12,908,949 separate data elements were submitted on 257,990 forms, which represents the largest contribution of data to FITBIR. All project aims have been successfully completed including evaluating the compatibility of the data sharing policies between the TBIMS and FITBIR, developing crosswalks between the TBIMS data and FITBIR common data elements CDEs, developing forms for transferring TBIMS unique data elements UDEs to FITBIR, testing the data submission process, pilot testing the adoption of Global Unique Identifiers GUIDs, and pilot testing the addition of new CDEs into the TBIMS data. After reviewing the results of these efforts, the TBIMS Project Directors voted to adopt the GUID and transfer TBIMS data to FITBIR on an ongoing basis, but rejected adding any new CDEs to the TBIMS National Database.