Founded around 3 years ago Myelopathy.org has continued to steadily grow to reach a global community of CSM sufferers, professionals and their supporters. As part of our goals to support research to help improve the lives of patients suffering with CSM, we have been allowing researchers to ask questions of our community to help them better understand the condition.
This has been tremendously successful, with our largest survey now completed by over 1000 people with CSM from around the world. This makes it one of the largest ever studies conducted in CSM and certainly the largest on patient perspectives.
The findings of the survey are yet to be fully analysed, but the researchers have recently published an article showing the key role of Myelopathy.org in reaching patients with CSM.
We are very proud to have been a part of this process and we hope you are too! This article highlights that we, the Myelopathy.org community, are not simply passengers but a force with a voice driving progress.
Your participation in these surveys is entirely voluntary but if you have the time to participate, please continue to do so. Our currently active surveys can be found here.
1. Davies et al. (2018). Lessons From Recruitment to an Internet-Based Survey for Degenerative Cervical Myelopathy JMIR Res Protoc 2018;7(2):e18
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