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

Over one year was spent obtaining the regulatory approvals required for this project to pilot test the transfer of Traumatic Brain Injury TBI Model System TBIMS data to the Federal Interagency TBI Research FITBIR Informatics System. Local IRB approval and HRPO approval has been obtained for the TBI Model System TBIMS National Data and Statistical Center NDSC, all 16 TBIMS Centers, and a follow-up center. The first two project aims to evaluate the compatibility of TBIMS and FITBIR data sharing policies, and to prepare a crosswalk between the TBIMS and the TBI Common Data Elements CDEs implemented by FITBIR have been completed by NDSC staff and discussed with the TBIMS Project Directors. The third project aim to program the transfer of TBIMS data to FITBIR is progressing. Forms for submitting the majority of unique data element UDE variables have been designed by NDSC staff and approved by FITBIR. The process of preparing forms for the remainder of the TBIMS UDEs is underway however we are in the process of hiring a replacement for the second person doing this work, who has also resigned. The plan is to complete all programming for transferring all de-identified TBIMS NDB data to FITBIR before getting final approval from the TBIMS Project Directors to actually transfer the TBIMS data to FITBIR aim 4. Project aim 5 is complete with TBIMS staff consenting 1,608 TBIMS participants and collecting the necessary personal identifying information to create GUIDs and aim 6 is over half completed with TBIMS staff collecting new Form I CDEs on 131 TBIMS participants and new Form II CDEs on 437 cases. A 6 month NCE has been requested and is pending.