The UK MS Register would like to share with you a message from Caroline Howlett of the MS Society’s Research Network…
‘You have spoken! Over 8,000 of you completed this year’s My MS My Needs survey. As a Person with MS and lay member of the Research Network working with the survey team, I’d like to extend a big ‘Thank You’ to you all.
Following on from your hard work, the team are now at the steep cliff face of analysing what this dataset tells us; one that’s large enough to find statistically, meaningful differences between bigger groupings such as regions of the country, but to also look into the findings in smaller, but key equality groupings of ethnic minorities and sexual orientation.
As a result, the MS Society will be able to track changes with the previous two studies’ results, likewise to see what issues remain of primary concern to us. Your time spent completing the detailed questionnaire will help make a real difference: Future Society policies will be shaped, as will campaign priorities.’
As the impact of these findings is realised, we at the UK MS Register will keep you updated. Thank you for your participation!
The UK MS Register is constantly evolving in a bid to improve and expand our online platform for people with MS and our clinical partners.
One important development that the MS Register is working on right now utilises a Natural Language Processing (NLP) computer program. NLP is designed to automatically recognise the text from any scanned document and convert it into digital information, organised into a computer database. The program is called ATEMS (Automatic Text Extraction for Multiple Sclerosis).
It is hoped that such technology could significantly improve the administrative burden on our partnering NHS clinical hospitals and sites. With so many competing priorities for NHS staff we expect this program will vastly reduce the time it takes to upload MS records to the MS Register; a crucial task to enable pioneering research into the condition.
The program is still in its infancy but the concept is already producing impressive results based on a small set of 100 clinical letters. The program’s precision was compared to the accuracy of human annotations of the same letters.
This preliminary work was showcased at the Association of British Neurologist’s (ABN) Annual Meeting at the end of May 2019. More detail about this work can be seen in the abstract poster below…
The other piece of work demonstrated at the ABN event was the improvements that have been implemented into the MS Register website. Launched towards the end of last year, many of you will have already experienced the new-look website.
Since the website re-launch we’ve seen user engagement levels increase, a surge of interest in the research we’re involved in and some excellent user feedback. More about this can be seen in the abstract poster below…
The Annual Meeting of the Association of British Neurologists took place from 21 – 23 May 2019 at the EICC in Edinburgh.
ABN 2019 NLP Poster
ABN 2019 PPI Poster