Big Data Project to Capture the Experience of MS Patients
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 there is a need for a system to collect comprehensive data that provides an in-depth picture of the experiences of MS patients across a large population.
Over an initial three year period, the OPTIMISE project will develop and deploy tools for collecting a wide range of data from people with MS in addition to routine clinical assessments. 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. The project will initially pilot the tools through MS centres in Imperial and three other UK institutions before expanding access to the approach for researchers worldwide.
OPTIMISE is a Joint Working collaboration between Imperial College London and the biopharmaceutical company Biogen Idec, who have a long-standing commitment to developing therapies for people with MS. 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 personalized 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.
Professor Paul Matthews, Principal Investigator on the OPTIMISE project and Edmond and Lily Safra 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."
Dr Fiona Thomas, UK and Ireland Director of Medical Affairs, 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 personalized 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 analyze data. A central element of the project will be an open access website (www.optimise-ms.org) to allow researchers to share, manage and analyze data within a secure framework.
Patients can use the system to report outcomes and also to discuss the project with other participants and provide feedback to the researchers. Smartphone apps will capture GPS data from movement sensors to monitor patient mobility.