We have identified terms for inclusion in the glossary by screening many resources including:
To create the initial GET IT draft glossary we selected four existing glossaries created specifically to support websites concerned with clinical trials:
Terms contained in each of these four glossaries were listed in alphabetical order then tabulated side by side so that different definitions could be compared. When a term only appeared in one glossary, it was adopted for GET IT; when more than one definition was available for a topic, whichever definition judged to be the most lay-friendly was adopted for the composite glossary.
Entries in the glossary were edited to exclude words that seemed redundant given our focus on supporting choices about treatments, or to provide additional clarification.
The text was copy-edited to remove inconsistences and to improve the clarity of the glossary.
The draft definitions were then tested together with people from our target audiences, namely people without a research background and those communicating research information to people without a research background and changed in light of what they told us. This testing continues; we welcome feedback on how GET IT can be improved [Link to Feedback form].
Finally, we anticipate that the glossary will eventually be available in many languages, starting with English.
If you would like more information, the full GET IT protocol is available [here].