Ethics
One of the goals of STIR is to create a central repository of clinical and imaging data obtained in acute stroke patients.
The central repository should include a statistically meaningful number of imaging studies obtained in acute stroke patients admitted within 12 hours of symptom onset. In addition to these imaging studies, relevant metadata such as clinical information should be collected using standardized definitions, including 1) scores of clinical stroke severity, e.g. NIH Stroke Scale, and other abstracted clinical parameters, 2) treatment records, 3) subsequent imaging studies, as well as information on 4) timing of symptom onset, admission, imaging studies, interventions and clinical evaluations, and 5) the results of these evaluations indicative of functional outcome, e.g. modified Rankin scores, Barthel Index scores and cognitive scales. In addition, whenever possible, blood should be banked from a subset of patients for the assessment of biomarkers.
The data collected in the repository will be made accessible to qualified researchers worldwide, based on the recommendations of a scientific committee that will evaluate proposed research projects. The confidentiality of patients’ information will be rigorously protected. Contributors will be offered suitable reassurance over the uses to which their data may be put, the acknowledgement that they as individuals and their institutions will be granted for ensuing projects and developments, and an opportunity both to assist with the academic leadership of the consortium and to access the repository for projects of their own.
Below are links that describe different country/institute specific rules applicable to sending patient data off-site into a repository:
Please email the rules applicable for your country/institute to Dr. Max Wintermark so that they can be posted on the STIR website.