In order to enhance and refine myositis outcomes, an initiative called the IMACS Outcomes Repository has been established. This initiative will allow for data collected in prospective clinical trials and observational studies to be pooled for prospective validation of the Preliminary Definitions of Improvement and future development of novel outcome measures.
Investigators may contribute the data from their clinical trial or prospective natural history study through several mechanisms. The requirements for inclusion of data in the repository are detailed in a document entitled, IMACS Outcomes Repository Requirements.
IMACS Outcomes Repository Data Submission Links:
- IMACS Outcomes Repository Requirements (75KB)
- IMACS Outcomes Repository Research Guidelines -- PDF Format (38KB)
- IMACS Outcomes Repository - Sample Institutional Review Board and Consent Form material -- Word Format (29KB)
- IMACS Outcomes Repository - Sample Institutional Review Board and Consent Form material -- PDF format (50KB)
- IMACS Outcomes Repository - Sample for Exemption of Informed Consent -- Word Format (24KB)
- IMACS Outcomes Repository - Sample for Exemption of Informed Consent -- PDF format (51KB)
- IMACS Outcomes Repository Variable List (92KB)
This is a list of the variable names that are being used in the IMACS Outcomes Repository secure internet Oracle database. If you are contributing a separate database to the repository, it is best if you can use common variable names whenever possible. Contributing investigators MUST submit a codebook of variables for their clinical trial or study. Please contact the IMACS coordinators for further information.