Common Data Elements for Neonatal Encephalopathy Research

Our group at the Newborn Brain Society has performed a modified Delphi process to develop a set of core data elements for research on neonatal encephalopathy, including data registries. These forms are currently open for public comment (see below). Please provide comments within the appropriate section. 
 
A couple of notes for the review:

• Each element category is separated into those that we believe should be core (i.e. ideally all registries would collect these elements) and those that are supplemental (i.e. may not be appropriate for every registry but are likely to be collected by enough registries that we wanted to provide a recommended collection format for them). 

• Feel free to propose additional core or supplemental elements, suggest elements that you feel should be characterized differently, and/or suggest changes to the format or response options for the existing elements. Note: boxes are those responses where more than one can be selected and radial buttons are those responses where only one can be selected.

• While reviewing, please keep in mind that our group encourages registries to collect additional site-specific variables above and beyond the core list, so the core elements in these forms are restricted to only those that should be nearly universal for different regions, countries, and hospital type.

 

If you would like to participate in the NBS HIE Collaborative, you can fill out the additional form through this link. 

 

If you are open to being contacted by our team for any follow-up questions regarding your comments, please provide your name and email address below. If neither is provided, your responses will remain anonymous.