UK Big Data Project To Capture Personal Data and Experiences Of Multiple Sclerosis Patients

Researchers will track the lives of people with multiple sclerosis (MS) in unprecedented detail in a project to improve the evaluation of treatments.

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 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.

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 personalised management of their disease.”

The OPTIMISE portal will use a custom-made software platform developed at the Data Science 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.

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.

OPTIMISE is currently in the planning stages. For further information on the project please contact Sally Rennick on [email protected].

For more information please contact:
Franca Davenport
Research Media Officer
Imperial College London
Email: [email protected] Tel: +44(0) 20 7594 3415
Out of hours duty press officer: +44(0)7803 886 248

Or

Sameena Conning
Biogen Idec UK and Ireland
Email: [email protected]
Tel: +44 (0) 1628 512682/+44 (0) 7850 508596

Notes to editors:

1. About Imperial College London
Imperial College London is one of the world's leading universities. The College's 14,000 students and 7,500 staff are expanding the frontiers of knowledge in science, medicine, engineering and business, and translating their discoveries into benefits for society.

Founded in 1907, Imperial builds on a distinguished past - having pioneered penicillin, holography and fibre optics - to shape the future. Imperial researchers work across disciplines to improve global health, tackle climate change, develop sustainable energy technology and address security challenges. This blend of academic excellence and its real-world application feeds into Imperial's exceptional learning environment, where students participate in research to push the limits of their degrees.

Imperial nurtures a dynamic enterprise culture, where collaborations with industrial, healthcare and international partners are the norm. In 2007, Imperial College London and Imperial College Healthcare NHS Trust formed the UK's first Academic Health Science Centre. This unique partnership aims to improve the quality of life of patients and populations by taking new discoveries and translating them into new therapies as quickly as possible.

Imperial has nine London campuses, including Imperial West: a new 25 acre research and innovation centre in White City, west London. At Imperial West, researchers, businesses and higher education partners will co-locate to create value from ideas on a global scale.

www.imperial.ac.uk

2. About Biogen Idec

Through cutting-edge science and medicine, Biogen Idec discovers, develops and delivers to patients worldwide innovative therapies for the treatment of neurodegenerative diseases, haemophilia and autoimmune disorders. Founded in 1978, Biogen Idec is the world’s oldest independent biotechnology company. Patients worldwide benefit from its leading multiple sclerosis therapies. For product labelling, press releases and additional information about the Company, please visit www.biogenidec.com

3. The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research. Since its establishment in April 2006, the NIHR has transformed research in the NHS. It has increased the volume of applied health research for the benefit of patients and the public, driven faster translation of basic science discoveries into tangible benefits for patients and the economy, and developed and supported the people who conduct and contribute to applied health research. The NIHR plays a key role in the Government’s strategy for economic growth, attracting investment by the life-sciences industries through its world-class infrastructure for health research. Together, the NIHR people, programmes, centres of excellence and systems represent the most integrated health research system in the world. For further informa