The Registry Data Collection Form
A goal of the on-line registry data collection form continues to be ease of data entry while maintaining the ability to collect sufficient information to allow relatively robust upper-level data analysis. Descriptive analysis of this top-level data permits both basic surveillance work and hypothesis generation for more detailed observational studies. Such studies may require retrospective patient chart review to collect more detailed clinical information not otherwise entered into the Registry. The Registry serves to identify such cases. To meet these objectives data collection remains limited to several basic data sections: record identifiers (institution, temporal, patient code), contemporary issues, demographics, encounter source/type, exposure (agent, type), clinical, treatment and vital status.
Entering patients on the Registry is generally done once, on first encounter with the patient, and takes a few minutes. Click here to see the data collection form.
Access to enter cases into the registry is username and password restricted within identified participating clinical sites. Please contact firstname.lastname@example.org if you are interested in joining the registry.