Multiple sclerosis: key data sources

The Scottish MS register

The Scottish MS register was launched in 2010 and collects information about new cases of MS diagnosed using the generally accepted McDonald criteria. This means that the register includes only definite and not probable cases. The register publishes information on the incidence of MS in Scotland and about performance against a target that new cases should be seen by a specialist nurse within 10 working days of diagnosis.

Practice team information

Up to 2012/13 the Practice team information (PTI) programme collected information on all consultations with members of the primary care team from a sample of around 60 Scottish practices. The main limitation of PTI as a source of information about multiple sclerosis (MS) arose from the fact that prevalence estimates were based on primary care consultations and that the natural course of MS means there may be long periods of remission from the disease during which patients may have little or no contact with the health service. In addition, PTI only recorded the reason for consultation, so that consultations for other health problems by people who happen to have MS were not recorded as MS. While PTI data provide historic estimates of the number of people consulting a primary care team because of MS, they underestimated the prevalence of the condition. The PTI system was discontinued in September 2013 and was replaced by the Scottish Primary Care Information Resource (SPIRE). 

Scottish Primary Care Information Resource 

SPIRE was a service that allowed small amounts of information from GP practice records to be used to help doctors’ surgeries, NHS Scotland and the Scottish Government to improve care and plan services, and to help researchers learn more from patient information held at GP practices.  It opened in 2018 and superseded the data collected for PTI. SPIRE aimed to include richer data from a greater number of practices, however, the data collection was decommissioned in 2023. It is being replaced by a new primary care data extraction tool which is being developed in partnership with Public Health Scotland, National Services Scotland, and the Scottish Government.

Data on hospital discharges 

The SMR01 database holds records of all inpatient and day case activity in NHS hospitals in Scotland as well as linked data on deaths in Scotland provided by the National Records of Scotland (formerly the General Register Office for Scotland). Because people with MS are not routinely admitted to hospital to make the diagnosis, and because much of their care is delivered in primary care settings, SMR01 data are not suitable for estimating the prevalence of the condition. Data from hospital discharges are presented in the section on secondary care.

Data on outpatient attendances 

The SMR00 database holds records of outpatient attendances in the NHS in Scotland. It provides information about the speciality providing care (for example in the case of MS, neurology or general medical clinics) but not specific diagnostic information. As a result it is not a reliable guide to prevalence or to the workload associated with MS.