Last reply 1 month ago
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.

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henrietta
1 month ago

@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.


dominics
1 month ago

Thanks, @henrietta


talley
1 month ago

@dominics I was diagnosed with RRMS in Jan 18, first meeting with my Neuro Dr and
team I was informed of the register what they did etc… so I signed up there and then
Been completing surveys ever since..


ritam
1 month ago

Hello @dominics, I only managed to register fully on the MS register earlier this evening, Coincidentally just before I saw your post. I can’t remember now how I heard about it but it was months ago in the early days of the pandemic. I tried to register so many times. There was a problem the first time I tried to enter my information. I kept getting emails from the register but despite numerous attempts to contact the administrators to explain why I hadn’t completed the questionnaires, I eventually gave up.

My neurologist’s PA asked me if I was on the register when she contacted me in May to arrange a telephone consultation. I explained the problem. However this evening I realised that I may be able to have another attempt at registering if I used an alternative email address. Finally this worked and I am now up and running.

I’m willing to respond to the questionnaires and be involved in the studies and will mention it to my MS team when I am next in contact with them so that I can be linked up. I hope this helps.

PS many thanks for your reply to my first post. I will be in touch, Thank you for the very helpful advice.


ladylaura
1 month ago

@dominics, Hadnt heard so thanks for info, will definitely register


rea
1 month ago

@dominics,
Signed up to this couple of years ago, I think through a link from MS society.
No one on my ms team has ever mentioned it.
I do complete questionnaires but frustrated at lack of options sometimes for answers & no facility to add correct info.


ollie123
1 month ago

I use it and pleased that this research is in place. My MS nurse gave me all the information in Hayward’s Heath.


dominics
1 month ago

Thank you folks. I should have asked you to share the name of your hospital. I

One of the aims of the committee that I’m on is to enhance the take up across UK hospitals.

It has been v patchy.

Also: thanks for sharing the problems. I’ll pass that on and it is good to know. I ended up getting involved more when I queried the usefulness of some of the surveys.

Keep the answers coming.


ollie123
1 month ago

Princess Royal – Haywards Heath.

I really hope more people get involved. They give you the data analysis which is always interesting to view. I am hopeful it will start to inform policy etc in due course.


peter_bishop
1 month ago

Hi. Diagnosed with PPMS in August last year. Never heard about the register. Going to take a look now.


vixen
1 month ago

Hi @dominics,

I signed up in March; brought to my attention by something on Shift (was it you?). Must admit, I wasn’t comfortable with the self-assessment EDDS; I didn’t realise that what I was filling in would result in a self-generated score which which unsettling. I contacted them with my thoughts on this but didn’t hear back.

I do think it’s a great resource and happy to be part of it.


iain_crosbie_1
1 month ago

yesw from the start ive been using the register, It provides another voice and helps track the UKs MS populationj

Yes, I’m signed up and have completed surveys. I think there were posters or leaflets about it in the Anne Rowling clinic and staff also informed me about it. I don’t log in regularly though as I forget about it. Though I do when I get prompted by email.


ian_johnson
1 month ago

I came across it by chance and signed up straight away.

I go to Sunderland Royal Hospital and am in the South Tyneside branch of the MS Society, but nobody had heard of it!

I’ve signed up to donate my brain and spinal cord when I die, to the MS Register.

I login when I receive an email, telling me there’s a survey to fill in.


dominics
1 month ago

Incredible response. thank you all. I am new to this so am trying to be proactive and learn a bit more.

I agree about the lack of responses and the seemingly odd online EDSS score. I believe that it could be explained better that it is likely to differ. For research purposes – as long as it differs consistently, that is fine. But they don’t say that.

Overall, it seems that some of the communication with the end-users – us – can be improved.

it is an altruistic ask so people need to be comfortable and things need IMHO need to be made more explicit.

Keep replying, it is all good and all appreciated. Thanks again to everyone so far.


henrietta
1 month ago

@dominics re which hospital – I’m with the National Hospital of Neurology and Neurosurgery in London


peterpanssister
1 month ago

I’m also signed up as of March ish time iirc and I need to hop on and complete the latest survey…


ritam
1 month ago

@dominics my hospital is Leeds General Infirmary. They have an MS specialist team.


watsoncraig
1 month ago

Signed up to it while back.
Aware as you mentioned it previously.
Answered a few of their questionnaires.

Good resources but lack of visibility hence the low rate of traffic, if pushed more Ian sure more PwMS would be aware and use this.

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