Scottish Multiple Sclerosis Register
Published: 13 September 2016
Scottish Multiple Sclerosis Registry Annual Report
Aim of Scottish MS Register
The aim of the Scottish MS register is to establish the incidence of MS in Scotland, to interpret the implications of its demography and so enable service evaluation and improvement.
Improve the quality of health care services and so ultimately the health of those with MS in Scotland.
Allow multidisciplinary teams to prioritise areas of service improvement through use of valid and reliable information.
Provide an on-going opportunity for multidisciplinary health care teams to interact with the Scottish MS Society and people who have MS. This has been achieved by partnership working across the public and voluntary sectors, allowing all those involved exploration and discussion of issues that are important to people with MS, their family, their carers and the professionals who give advice, guidance, support, and treatment.
Potential benefits are:
- A unique national database of a incident population of MS.
This database will provide a rich source of information on basic demographics.
- Working in Partnership
The MS Society Scotland and health care staff with an interest in MS have been the driving force behind the creation of the register. This has ensured that people with MS, their family and their carers have been involved in the development of the type of information the register holds. As such, the information produced will facilitate learning, discussion and debate of the issues that are important to people with, and affected by, MS and the professionals who are involved in providing advice, support, treatment and care.
- Informed decision-making
The MS register will be used to:-
To increase understanding and knowledge about MS at an individual and societal level, allowing regional and national authorities to make informed and tailored decisions about MS service provision.
To aid multidisciplinary teams in improving the management of their patients by comparing process and outcome measures. It will also inform strategic planning by the Scottish Government and NHS Boards about levels of activity and resource requirements for people with MS.
To allow comparison of clinical services at local and national levels e.g. NHS QIS Neurological Standards supplying professionals with information for bench- marking improvements in service quality and service capacity.
To initiate and manage research which will provide evidence to substantiate change in practice. With appropriate consent and ethical approval, there is the opportunity to follow the population of people with MS, making it possible to investigate changes in clinical practice of individuals or groups of people with MS over time, for example, through linked longitudinal studies.
Further information on the MS Register can be found at http://www.msr.scot.nhs.uk/index.html