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Your help needed- UK MS Register

Hi, - This is entirely without judgement and for UK MSers. It involves a few min of your time, no money ;) - I am interested to know who has ever been told about the UK MS Register? - https://ukmsregister.org/ (check this out as well if you like https://www.youtube.com/watch?v=s10osAwugO0&list=PLVUOB-ZqvZOFdQKAX5Gv5q4IDVg9qNrGy&index=7 ) - Who by? - Have you ever looked? - Signed up? - Answered any of the questionnaires/studies? - I ask because the Register, which is there for all of us and is funded by the MS Society in the UK. Although, suffers from a real lack of engagement from pwmS. They are interested to learn why that may be. - It is there to collect anonymous data so that MS researchers can have an accurate model of the UK MS Population. Everything is anonymised, the requests for the anonymous data are then reviewed by a strict panel but they are not clear if it is distrust, lack of encouragement/promotion by your MS Teams etc. - My disclosure is that I am on the Operational Delivery Committee of the MS Register and part of the remit is to see how more people can be encouraged to invest the time to sign up. - Thank you for your help.

@dominics I was diagnosed with RRMS at the end of July. No one told me about the register but I came across it somewhere in my (endless) MS googling and immediately signed up as I liked the idea that I would be doing something useful. I’ve filled in as much data as I can though I’m not yet linked to my hospital - I am going to raise it with them during my next (phone) appointment. I was a bit taken aback at the amount of personal info I was prompted to give but I’m a trusting soul so felt comfortable with it overall. Happy if it helps really.


Thanks, @henrietta