Where are we up to?
We have had a great response, so far, to this second round survey, with 166 of you taking part (although only 134 finished the survey to the end!). Whilst this is a fairly large number of people, we would love to have many more! This is because, the more people we have reporting their symptoms, the more accurate and significant our results will be. This in turn means that we will be more likely to help improve diagnosis times for patients.
Have you shared you experience of DCM? If not, we would love to hear from you! The survey can be found on the Myelopathy.org website, under the research tab, in the survey section or directly by following this link: Click here for Round 2 DCM Survey!
How can you help?
We would be really grateful if more of you could take part in our second-round survey. You don’t need to have done the first round to take part, anyone is welcome! Thankfully, the second-round survey is much quicker to complete than the first round and should take less than 10 minutes.
Reminder of the background:
This project originally had its beginnings all the way back in September 2016 with the Myelopathy Day at the University of Cambridge, where a small group of people described how DCM affected them. There were some fantastic results and insights obtained from that day, giving us a long list of symptoms and ways in which DCM can affect your life. This was eye-opening, as some of the descriptions were totally different to what the medical textbooks say! However, in order to ensure these results represented everyone with DCM, we needed to test the results in a larger group of people, to see if we had missed anything.
To achieve this, we put together a survey (the first round) that went live in January 2016. Over 300 people took part in this round! A massive thank you to you all! We again managed to get some great results, especially regarding which categories patients find most important.
Nevertheless, following this first survey, quite a few of you mentioned symptoms and effects on your lives that we hadn’t previously considered. This meant that we had to add these to our lists and then re-survey everyone, to see how common these symptoms were amongst all DCM patients, to ensure they were also fully representative.
Thank you all in advance for your help, happy surveying!
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