RDCRN Data Catalog User Guide
- Karen Lapthorn
The Data Catalog User Guide provides detailed instructions on the primary features and functionality of the Data Catalog application.
Help and Resources
If you need additional help or training using the RData Catalog, need to report an error, or have a question, use the RDCRN Service Desk to contact us.
How to access the RDCRN Data Catalog
The Data Catalog can be accessed using RDCRN credentials via the url https://datacatalog.rarediseasesnetwork.org/
Query Tool
Accessing the Query menu item from the top menu give you a list of all variables that have been transferred to Chiron from the data source (such as REDCap). Variables are grouped into sections such as Enrollment, Visit, Medical History, etc. Expand each section and click on a variable name to view charts or lists representing the records.
To build a cohort, select the desired variable(s) and click the ‘Add to Cohort Definition’ button. You will see your cohort definition and corresponding Subject Count in the right column.
Results View
Use the Results menu item to build a view of patient-level data. The records shown will include all patients in your cohort. Clear any cohort criteria in the left column to view records for all subjects.
Adding the patient Record ID as a column is often the best place to start. Next, select additional data to include and click the Show Data button to view all records.
Hover your cursor near the top of each column to see a menu with options to change column order, duplicate a column, remove a column or edit. The edit menu gives you a number of options for how to display the records. You can select Stack which creates a new row for each distinct value. Other options include listing only distinct values or listing counts.
Use the Save as Report button to save your results under the Reports menu item.
Reports
Reports saved from within the Results View are kept in the Reports section of the site. Reports can be shared with other users who have permissions to access the same data set within the Data Catalog.
Aggregate View
The Aggregate View tool allows you to display data in tables showing subject counts. No patient level data can be viewed in the Aggregate View.