UK MS Register Newsletter – March 2019

The latest edition of the Register’s newsletter should be hitting inboxes this week.

UK MS REGISTER NEWSLETTER – MARCH 2019

 

Data

Digest

What is the UK MS Register?

The UK MS Register is a ground-breaking study designed to increase our understanding of living with MS by capturing more real world data from people with MS in the United Kingdom. This provides an extremely rich bank of data which is producing important research. Examples of this work can be found on the ‘publications’ page on website. Read more.

Is my data secure?

The Register is a secure e-research platform utilising High Performance Computing. Carefully designed Information Governance ensures person-based data with high privacy risk is managed to the highest standards, and is ISO 27001 certified. Read more.

Have your say.

We welcome any feedback, ideas, suggestions or complaints to the MS Register team using our contact form, or by emailing contact@ukmsregister.org .

Questionnaire Window Now Open!

Every 6 months we ask you to complete a series of questionnaires through our online portal. The window for completing questionnaires is now open. As well as our regular ongoing surveys we also have some guest questionnaires available for completion. These include:

My MS My Needs 3. Conducted by the MS Society aiming to gain information on the needs of people living with MS in the UK. (open until 31st May 2019).

Fatigue and Physical Function (with Merck KgAA). You will only see this if you took part in the launch 6 months ago. Keep completing these to increase your chances to win an iPad!

Read more here

What You’re Telling Us…

  • 11,143 of you have completed the questionnaire ‘My other conditions or comorbidities’.
  • 18,418 other conditions or comorbidities have been reported.
  • 3,464 have reported that they have no other conditions.

The most widely reported conditions broken down into sub-types…

Read more here

MS-STAT2: A Secondary Progressive MS Study.

The MS-STAT2 clinical trial has been designed to test the effectiveness of repurposed simvastatin in patients with secondary progressive MS (SPMS), to determine if the rate of disability progression can be slowed over a 3 year period.

Read more here

Vitamin D Study Update

Thank you so much to everyone participating in the ‘Vitamin D levels in people with MS’ study! We are so pleased at the level of interest this study has generated from all across the UK. We have had over 1700 participants enrol and complete a questionnaire.

Read more here

UK MS Register Welcomes a New Analyst to the Team!

Elaine Craig, Research Analyst

Read more here

Got a minute?…

We would like to ask you a quick question based on your experiences around MS and Childbirth. The survey is very brief and available to both women and men, however, not everyone will see it in the list of surveys. If you do, we would very much appreciate your input. Contains a maximum of only 4 questions and should take less than 5 minutes.

Events in 2019

The UK MS Register will be exhibiting at the following events in 2019…

  • Living Well With MS – Parc Y Scarlets, Llanelli, 22nd March 2019
  • MS Society Cambridge Group Meeting, 29th April, Ely Leisure Centre, Cambridgeshire
  • ABN Annual Meeting 2019, 21 – 23 May, The EICC, Edinburgh
  • MS Frontiers – University of Bath, 4-5th July 2019
  • ECTRIMS – Stockholm, 11-13th September 2019

And finally…

If you’ve been completing questionnaires on our portal recently you may have noticed that the Barthel Index survey no longer appears. Our research has shown that this survey isn’t telling us anything that our other existing surveys aren’t. This research, presented at ECTRIMS, can be seen here –