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Risk sharing scheme

In February 2002, after a period of postcode prescribing and an assessment by the National Institute of Clinical Excellence, the Department of Health (DH) announced the MS Risk-sharing Scheme, issuing Health Service Circular 2002/004.

The Risk-sharing Scheme (RSS) is the mechanism that ensures the disease modifying drug therapies, beta interferon and glatiramer acetate, are available on the NHS. It also specifies the research element to assess the cost effectiveness of the agents.

The MS Trust has a pivotal role within the RSS to work alongside the DH to ensure the effective collection of the research data. We therefore act as the administrator for the research, managing the research provider to ensure effective interaction with the centres and collection of the data, managing the scientific advisory group, and the finances.

To date 5,583 patients have been recruited to the research project within 73 specialist centres across the UK. Two-year data is available for all participants and the first analysis has been undertaken.

We are working with the Scientific Advisory Group to consider ways to improve the MS model used by the National Institute for Clinical Excellence. In particular is there now a more appropriate natural history data which would be an improved comparator? The original data used was Canadian and dates back twenty to thirty years. If there has been any change to MS as a condition this is not now a good comparator.

In addition the Scientific Advisory Group has discussed additional research to be undertaken with the RSS cohort. This includes a new Quality of Life study to identify the cost of MS to individuals and the impact on their life. In addition it is hoped that it may be possible to set up a bio-repository which would allow further genetic work.

Further information and results will be posted on this site in due course.

A leaflet about the Scheme has been produced by the Department of Health, the Association of British Neurologists, the MS Trust, the MS Society and the four pharmaceutical companies. The leaflet explains the background to the Scheme, the governance arrangements and progress so far.

Download the Risk-sharing Scheme leaflet