Researchers from Imperial College London and Biogen Idec will track the lives of people with multiple sclerosis (MS) in unprecedented detail as part of a project to improve the evaluation of treatments.

Over an initial three year period, OPTIMISE will work to integrate brain scans, genomics data, biomarkers from blood samples, self-reported quality of life measures and data from sensors that track movement into a single database

The project will work to integrate brain scans, genomics data, biomarkers from blood samples, self-reported quality of life measures and data from sensors that track movement into a single database. OPTIMISE will initially pilot the tools through MS centres in Imperial and three other UK institutions before expanding access to the approach for researchers worldwide.

MS affects more than two million people worldwide and there are more than 100,000 people living with MS in the UK. Symptoms are different for everyone but commonly include fatigue, tingling, speech problems and difficulties with walking and balance - to gain a better understanding of MS and its treatments the project has a key goal of creating a system to collect comprehensive data that provides an in-depth picture of the experiences of MS patients across a large population.

Professor Paul Matthews, Chair in Translational Neuroscience and Therapeutics at Imperial College London, said: "This important collaborative project is underpinned by support from the National Institute for Health Research (NIHR) Imperial Biomedical Research Centre. It will enable a new level of clinical research for MS.

"It will aggregate data from MS patients and their carers to provide a detailed picture of how the disease affects them and how well current treatments work. Although led by Imperial, this initiative has grown out of a co-operative vision developed between most of the major MS centres across the UK. Looking forward, we intend that this public-private collaboration will grow with the same spirit of cooperation."

By comprehensively capturing and managing data in ways that can be implemented at a low cost and a large scale, the project will allow researchers to better monitor outcomes and evaluate new treatments. This will also help to develop more personalised therapeutic approaches based on an understanding of the individual factors that contribute to the progression of MS.

Transparency of data and open access are at the heart of the project. OPTIMISE will collect both clinical and patient-centred data with the longer-term aim of making these data accessible to both researchers and the patients who contributed. Biogen Idec has provided initial funding for development of the OPTIMISE IT software and the collaboration also intends to facilitate links with MS registries across Europe, who are already collaborating with Biogen Idec. The collaboration will bring additional “in kind” resources for analyses of data in ways that will contribute to patient benefit.

Dr Fiona Thomas, UK and Ireland Director of Medical Affairs at Biogen Idec, added, “This innovative project heralds the first systematic and multi-centre collection of patient, physician and MRI data in the UK to better inform doctors, the health service and industry about patient needs. This will facilitate critical analysis of MS patient populations allowing clinicians to offer more personalised management of their disease.”

The OPTIMISE portal will use a custom-made software platform developed at the Big Data Institute at Imperial College London to store, curate and analyse data. A central element of the project will be an open access website (www.optimise-ms.org) to allow researchers to share, manage and analyse data within a secure framework.Smartphone apps will capture GPS data from movement sensors to monitor patient mobility.

OPTIMISE is currently in the planning stages. For further information on the project please contact Sally Rennick on s.rennick@imperial.ac.uk.