Registers are raising the bar: past, present… Future

Past:

To better make sense of people's experiences with MS so that we can best support them in their lives, we need better information. This was highlighted by numerous speakers at the earliest 'Raising the Bar for MS' event.

The UK MS Register, was commissioned by MS Society and launched in 2011.

Present:

The Register currently has 48 hospital sites and over 12,000 people with MS feeding in data.

It is a single space comprising multiple forms of data which can be cut in numerous ways. Cutting the data in different ways can produce subsets of data such as for smoking and pregnancy.

The accessible data and active participants in the Register meant that, within a week of proposing a study into COVID and MS at the very start of lockdown in the UK, over 5,500 people with MS were signed up to participate.

On day 2 of Raising the Bar 2020, we will hear from:

• Dr Ruth Dobson on her research with the pregnancy register,
• Prof Richard Nicholas on the COVID-19 study,
• Rod Middleton about innovations on the horizon and how you can get involved.

Future:

The COVID-19 pandemic has created challenges around virtual appointments and data sharing between professionals and people with MS.

The Register is currently developing:

• an online portal for pre-consultation assessments housing
  • assessments for the person with MS to complete prior to their appointment,
  • their latest MRI scans.
• a way to gather data from
  • online psychological testing,
  • natural language processing of letters and other text data.

The Register is only as useful as the data it holds, which is reliant on you, as clinicians, getting involved. By partnering with the Register, you will:

• contribute data
• help research
• have access to the online portal
• better support your patients to self-manage

Further information regarding the pregnancy and smoking registers:

• Interview by the MS Trust with Ruth on pregnancy and MS
• Dobson R, Dassan P, Roberts M, Giovannoni G, Nelson-Piercy C, Brex PA. UK consensus on pregnancy in multiple sclerosis: 'Association of British Neurologists' guidelines. Pract Neurol. 2019 Apr;19(2):106-114. doi: 10.1136/practneurol-2018-002060. Epub 2019 Jan 5. PMID: 30612100.
• MS Register blog: piece on smoking and MS
• MS Society's smoking and MS factsheet
• A meta-analysis of smoking and risk of MS comprising 20,626 cases (Zhang, 2016)