Friday, 1 May 2015

What's in a Name, MayDay

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? (Sorry if you are not UK based, as part of my awareness we I will write to NARCOSMS in the USA, so see if they can do the same thing) 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.

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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.





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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

2 comments:

  1. For the Australian option - do you know if this is the same as MSBase.org that my neuro asked me to sign up to?

    ReplyDelete
    Replies
    1. No it isn't the same. The AMSLS study has been running for over ten years now, and has produced some significant papers from the data collected. If you click on the "Click here" link (not on the flag) it will take you directly to the relevant webpage of the MS Research Australia website, and you can access the publications from that page. There are also button links at the top where you can get information on the study, and sign up to join the study. Go for it - every voice counts.

      Delete

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