Scottish Multiple Sclerosis Register
 


The Scottish MS Register

Scottish Multiple Sclerosis Register National Report 2017

The Scottish Multiple Sclerosis Register National Report was published on 12 September 2017. A link to the report is available here.

Why the MS register is important:

Multiple Sclerosis (MS) is a condition of the central nervous system. It is the most common disabling neurological disease among young adults and affects around 100,000 people in the UK. MS is most often diagnosed in people between the ages of 20 and 40, and women are almost twice as likely to develop it as men.

At present, there is limited information on the number of people affected in Scotland. There is a need to provide baseline data to understand the most basic epidemiology of the condition in Scotland and so provide an informed basis for evaluating the quality of care for people affected by MS.  To achieve this an incidence register of MS in Scotland was launched on 1st January 2010.

A proforma for collecting the information was developed by the Scottish MS Register steering group, with input from NHS Quality Improvement Scotland and the Chief Scientist Office. The data collection was then piloted twice and has been refined accordingly.

By analysing patient data, as well as feedback from clinicians, we have been able to design a national data collection tool to collate all new cases of MS in Scotland from 1st January 2010. As well as collecting data about the number of people with MS in Scotland each year, the register will examine patient management during the patient journey from referral to diagnosis.  It is hoped that this will be a stepping-stone to further audit and research projects.

Aim of the register:

The Scottish Multiple Sclerosis Register (SMSR) aims to improve the care of people with multiple sclerosis (MS) by the use of systematic, comprehensive audit of their diagnosis and early management providing feedback through regular reporting and annual review of performance against national neurological standards.

Objectives:

  • Establish and maintain relevant high quality validated datasets;
  • Establish and maintain efficient process for collection of SMSR data;
  • Regularly review evidence based national standards of MS Care;
  • Monitor compliance to the agreed national standards of MS care;
  • Ensure timely and accurate reporting of results;
  • Establish anaysis of variance in a timely, objective manner and ensure appropriate action is taken when necessary in line with clinical governance, e.g. Health Board Review Meetings as necessary;
  • Support staff to use the data effectively to drive improvement in delivery of MS care at a local level;
  • Collaborate with other agencies to develop quality improvement initiatives;
  • Encourage secondary data use to aid research and practice development both at a local and national level;
  • Identify specific aspects of care that would benefit from review using sprint audits;
  • Raise awareness of standards of MS Care delivery in hospitals across Scotland by publishing an Annual National Report; and
  • Share best practice with colleagues, e.g. Annual National SMSR Meeting.

Entry and exclusion criteria on to the register:

Inclusion
People who are newly diagnosed with multiple sclerosis from 01.01.2010 as defined by Poser 1983 and the Revised McDonald Criteria 2005

Exclusion
Possible multiple sclerosis
Clinically isolated syndrome