Whats in Name 28th

This week it is MS awareness week in the United Kingdom

Scientists and Neuros and health care professionals write papers every day and you are increasingly getting to see them with open source information. It is interesting how they refer to you in these papers and grants. Maybe it is time you said what you prefer. 

What’s In Name?

We have asked this before and now I am asking this again. Why? 

      We get trolls that try to damage our professional reputations  
and in doing this hasten the end of this Blog.

So I would ask you to consider helping us and
consider signing up to the MS Register 
to help me respond to the Trolls
We are seeking independent assistance to get a bigger sample size
to address journal editors concerns

The MS Register is a ground-breaking study designed to increase our understanding of living with MS in the UK.

Are you over 18, living in the UK , with a confirmed diagnosis of Multiple Sclerosis?  Then you need to take part in this ground breaking study (Click here) 

Once you have completed the registration form you will find a series of questionnaires please complete them, notably 

What’s in a Name.

For your reassurance, The MS Register has gained official approval from the National Research Ethics Service Committee South West – Central Bristol. To gain this approval, Swansea University College of Medicine was required to go through a thorough audit of information management practices.

If you opt-out from the MS Register, your details will be deleted
If, at any point, you decide you would rather not continue to take part in the MS Register, just let the MS Register know. Although the information you have given them through our online questionnaires or clinical study will remain in their database, they will delete your name and address and will have no way of linking this information to you.

Disclaimer By completing our survey “What’s in a Name” you are consenting to the data you provide being analysed by the MS register and possibly Professors Giovannoni and Baker and their collaborators. Results of these surveys may be submitted for publication but will be anonymous.

Also one of the biggest things that came from Pharma interest in MS, which makes a positive impact to people with MS, is the MS Specialist Nurse.
The MS Trust is running a campaign to ensure you all get access to an MS Nurse..Join the campaign…..I have….and sign up! 

It costs you nothing except about a minute of your time.

Live in Australia sign up to their Registry  (Click here)

Live in the USA sign up to their Registry (Click here)

Sorry you can’t do our survey, but sign up to 
help researchers in your Country

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1 comment

  • There is nothing to lose and so much to gain by helping with these registries – I wish all of you in the UK a productive MS Awareness Week where you unite your voices (and data) to let your government and others know what you need. Don't expect someone else to do it for you – we really are all in this together.

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