Thanks, I have sent off for the forms.
I am looking forward to telling people that I’m leaving my brain to science 
I have been on the register about a year.
Even if you can’t be bothered to do any of the optional quarterly questionnaires (which is not much bother really!), at least being on the register means they know you exist!
Thank you. I vaguely knew about this but didn’t know where it was. I have completed all questionnaires and asked for the info to be shared with my hospital. I also asked that they look at quality of sleep, which wasn’t really included but I think it must contribute to fatigue and depression.
Private companies will pay for access to such data.
Would we be paid a rent for keeping our MS data on file??
I don’t think this data is for sale so I’m a bit puzzled about where the ‘rent’ would come from. I think the NHS and the government should have a record of the number of people with MS and the MS register is a way of providing this.
I don’t think this data is for sale so I’m a bit puzzled about where the ‘rent’ would come from. I think the NHS and the government should have a record of the number of people with MS and the MS register is a way of providing this.
I don’t think this data is for sale so I’m a bit puzzled about where the ‘rent’ would come from. I think the NHS and the government should have a record of the number of people with MS and the MS register is a way of providing this.
Sorry about that - I don’t know why it posted three times. I hope this one doesn’t do the same.
I assumed you just felt very strongly about it!
New York, New York, New York or something like that!
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to reply to Doctor G’s earlier post.
Agree, it would be very interesting to find just how many pwms are ‘on the books’ with different neuros and what treatment if any they are on.
Could this information be got by using the Freedom of Information act?
I heard it from the people behind the MS Register (who were presenting to our local MS branch, along with the tissue donation bank) that they take your privacy very seriously and if they do provide any data for research, it’s fully anonymised.
Jo x
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Someone with more knowledge of the FOI should really answer this, but I do not really think it would work.
You would probably have to apply to each neurology department separately, and some of them do not handle MS clients.
I might be fun to send a FOI request to the Health Ministry, asking for the total numbers.
If they “did not know”, it would make a good newspaper headline (and they would just like that - should have done it before the election was announced).
I have seen some figures that suggest that it is substantially higher than the 120,000 that the MS Society uses as a guide.
You can try this for yourselves by looking for the "incidence of MS per 100,000 population, and then comparing this to the size of the UK population…
Geoff
Ypu might also be interested in:
which suggests that something like 133,000 could be nearer the mark.
Could provide something to lay on the next political canvasser who knock on your door.
Geoff