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GOAL: For each condition summary to be added to the Genetics Home Reference (GHR) web site, GHR staff will choose a name that is scientifically sound and reflects terminology used by researchers, clinicians, and patients.
Many conditions have multiple names associated with them because of scientific, idiosyncratic and historical reasons. GHR staff use the following guidelines to select the condition name that will be featured in the GHR topic:
Determine whether there is agreement in naming among a majority of key resources, including:
When there is majority agreement among those resources, GHR will use this condition name.
If there is no agreement among those resources, GHR staff will look to the following sources for additional guidance:
In cases where there is no clear majority after a thorough review of the findings from items 1 and 2, GHR staff will discuss the different naming options for a condition and use their professional judgment to make a final decision.