This project is focused on the consensus development of standards needed for data management in neurocritical care. Neurocritical care is a new discipline in medicine and rapidly growing with new knowledge about the injured brain and new ways to measure it. Patients in neurocritical care are high-volume data generators and this field is ripe for the use of big data technology.  Unfortunately, there is a lack of standardized terminologies as well as metadata to describe how it was collected.  Our goal is to create a comprehensive vocabulary specific to neurocritical care by leveraging existing standards and filling in the gaps. 

The problems encountered in neurocritical care terminology are as follows:

  1. Orphan Terms: Terms that have no standard definition (e.g. partial pressure of brain tissue oxygen)
  2. Multiple Definitions: Terms that have different definitions in multiple standards (e.g. Intracranial Pressure)
  3. Ambiguous Terms: Terms that are ambiguous (e.g. Mean ICP)
  4. Structure: A general lack of the sematic structure of the terms (ontology)
  5. Metadata: A lack of metadata or annotations important in further defining a term (e.g. EVD stopcock open/closed)


Our approach is as follows:

  1. Scope:  Our scope is limited to physiological measurements obtained from patients such as intracranial pressure, brain oxygen, pupil reactivity, blood pressure, etc.  
  2. Priority:  The priority is to focus on the more neuro-centric measurements. 
  3. Resources:  We are reviewing existing standards and documents to determine gaps in nomenclature and areas of ambiguity. We are working with existing projects such as Common Data Elements, OHDSI, and others.
  4. Tools:  We have developed a wiki, discussion forum, and Github to document our progress (see below)
  5. Consensus Group:  We are creating subject matter consensus groups to develop and refine the terminology and ontologies.  We are working with several professional organizations such as the Neurocritical Care Society.
  6. Publications:  Our work is available on our website and is periodically published and presented at scientific meetings.  

The tools we have created and their intended use are as follows:

  1. Terminology Wiki:  This wiki is devoted exclusively to terminology issues.  The purpose is to organize existing information and to document our progress.   
  2. Discussion Forum:  The Vocabulary category in the discussion forum is devoted to discussions on terminology.  Topics focus on specific measurements and related issues.
  3. GitHub:  We are developing a repository of documents related to our topics and/or generated by our group.


You many freely view the results of our work.  Join the group to participate in the discussions and help with project.