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. 2023 Apr 22;23:100. doi: 10.1186/s12874-023-01897-6

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© The Author(s) 2023

Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

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Fig. 1 — Word Cloud Development. A 3-stage process was used to collect unique words relating to DCM and survey their popularity to create word clouds. Words were initially submitted by Myelopathy Support, a community of PwDCM and their supporters. These were then processed by the AO Spine RECODE-DCM Management Group and supplemented with the perspectives of a general practitioner and a neurologist; arrows denote added and removed words. The final list of words was re-reviewed by the Myelopathy Support community. Voting was conducted to capture the popularity of each word and further suggestions were also put forward. The four-column tables represent the number of words per subsection, ordered from left to right as: diagnosis, treatment, long-term management and other