The Translational Informatics function of the Colorado CTSI develops research informatics tools and provides training and support for research informatics needs. To facilitate data sharing between investigators utilizing the collaborative, we have employed REDCap, a web-based, HIPAA-compliant study data management solution that is straightforward and robust and being adopted widely by members of the national CTSA consortium. Human participants data collected as a part of CoPARC investigations will be stored on the REDCap system. The data can be accessed by designated investigators as part of on-going research efforts.
The REDCap (Research Electronic Data Capture) data management system has been used in CoPARC data management since its inception. REDCap, a web-based, HIPAA-compliant study data management solution is straightforward and robust and being adopted widely by members of the national CTSA consortium. REDCap enables password-protected access to CoPARC data, and meets all HIPAA security provisions. Participant type-specific databases are established to collect and store information from enrolled participants. Data dictionaries have been created that contain case report form elements and clinical laboratory data. REDCap’s Data Access feature will enable consortium investigators password-protected access to data with approval. Through its file repository feature, REDCap will be used to catalog important consortium information, including experimental data generated with CoPARC samples. Additionally, a unique database with sample information pertaining to enrolled patients from non-UCD sites will also be housed on REDCap. Descriptions of the type of data being collected are provided below. Please also see "Documents and Resources: Case Report Forms".
1. Data from AUD participants and Control participants: A detailed screening exam and data collection will be performed, including
After screening is complete, participants will complete additional surveys and questionnaires
2. Data from critically ill patients with either respiratory failure or burn injury: Patients will have a complete assessment as soon as possible after admission, preferably within the first 24 hours. This will include collection of data regarding:
Patients will be monitored daily for changes in their status. In-hospital outcomes will be assessed in patients including: