The Importance of Patient and Public Involvement in Medical Registries.

The United Kingdom Multiple Sclerosis Register has been enjoying a recent suite of high profile endorsements, emphasising the importance of involving people with multiple sclerosis (MS) to progress medical research.

The UK-based, Association of Medical Research Charities (AMRC) lists the UK MS Register as being one of the leading UK data patient registries. The AMRC highlighted the innovative way in which the UK MS Register is being used to lower barriers to research, drive efficiency and reduce costs. The full article which features a case study on the MS Society and the UK MS Register is available here http://bit.ly/2KmhbZs .

 

Since it was launched in 2011 the UK MS Register, based at Swansea University, has been funded and championed by UK charity, the MS Society. As part of the charity’s involvement programme, the MS Society promotes a model of collaboration by engaging people with MS in the charity’s long-term organisational vision, whose goal is for everyone to live a life free from the effects of MS.

The register links MS researchers to a large community of people with MS via three mechanisms;

  1. Participants are asked to complete a series of questionnaires every six months.
  2. Participants can also consent to have their medical records securely linked to the register and their questionnaires.
  3. Other clinically collected data can be also be linked to the register. For e.g. GP system data.

This creates an incredibly rich data source. Numerous analyses, performed by the Wellcome Trust and several other large medical research charities, have demonstrated an overwhelmingly positive public attitude to contribute their information to medical registries.

Dr Susan Kohlhaas, Director of Research at the MS Society, said: “We’re driving research into better treatments and care, and the UK MS Register is an integral part of that process. Most importantly, it helps us more fully understand what it means to live with MS in the UK today. Our research priorities are set by people living with the condition, and the Register provides important insights into what they want, including how to stop disability progression.”

The MS International Federation, ‘a unique global network of MS organisations, people affected by MS, volunteers and staff from around the world’ have also commended our work. In a recent article the federation shines a spotlight on some of the largest and most impactful registries from around the world. The full article presents a case for putting people with MS at the heart of research and how registers such as the UK MS Register are instrumental in this… https://bit.ly/2ROxIwg .

To find out more about the register please follow this link to our website https://ukmsregister.org/  and check out our publications section https://ukmsregister.org/Research/Publications to the kind of research resulting from this the project.