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EMIF

European Medical Information Framework

Summary

The EMIF project aims to develop a common information framework of patient-level data that will link up and facilitate access to diverse medical and research data sources, opening up new avenues of research for scientists. To provide a focus and guidance for the development of the framework, the project will focus initially on questions relating to obesity and Alzheimer’s disease.

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Difficulties with data

Recent years have seen an explosion in the number of databases containing medical and research data, from Electronic Health Records (EHRs), cohort studies (in which a group of individuals are followed for a number of years), disease-specific studies, and biobanks, to name a few. Because this data is scattered across diverse platforms, it cannot be fully exploited. Linking up the data would allow scientists to significantly advance medical research and drug development.

However, in practice, this is rather difficult. Not only is the data fragmented, differences in coding systems and languages, plus legal and ethical restraints, hamper efforts to combine these sources of data. Furthermore, there are often information gaps.

There is therefore a need for a single system that allows researchers to link data on an immense scale, including patient health records, research data, survey and administrative data, imaging, social, environmental and economic data. Such a system should also be able to bring together data from different populations; this would increase sample sizes and facilitate the study of rare or highly specific subgroups.

A common information framework

EMIF will develop a common information framework that will not only facilitate access to existing data sources, but ease the creation of links between sources and, where needed, collect additional information. The work will require the team to address a number of issues, including data standards, semantic interoperability, ethics, data privacy, legal issues, and the development of an IT platform that allows access to multiple data sources.

To guide the development of the framework, the team will initially focus on two key research issues:

  • identifying the mechanisms that make some people more susceptible to dementias (such as Alzheimer’s disease) than others;
  • determining which individuals with obesity are most likely to develop complications such as diabetes.

Obesity and dementia are two of the greatest healthcare challenges of our time; EMIF’s work will pave the way for new diagnostic tools and treatments to help patients with these conditions. Looking to the future, additional research areas may be added to the framework through future IMI Calls for proposals.

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Participants

 EFPIA 

  • GlaxoSmithKline Research and Development Ltd, Brentford, UK
  • Amgen NV, Brussels, Belgium
  • Boehringer Ingelheim International GmbH, Ingelheim, Germany
  • F. Hoffmann-La Roche AG, Basel, Switzerland
  • Institut de Recherches Internationales Servier, Suresnes, France
  • Janssen Pharmaceutica NV, Beerse, Belgium
  • Novo Nordisk A/S, Bagsværd, Denmark
  • Pfizer Limited, Sandwich, UK
  • UCB Pharma SA, Brussels, Belgium

Universities, research organisations, public bodies, non-profit groups

  • Erasmus Universitair Medisch Centrum Rotterdam, Rotterdam, Netherlands
  • Aarhus Universitetshospital, Aarhus Sygehus, Aarhus, Denmark
  • Agenzia Regionale di Sanita, Florence, Italy
  • Assistance Publique - Hôpitaux de Paris , Paris, France
  • Brighton Collaboration Foundation, Basel, Switzerland
  • Ealing Hospital NHS Trust, Southall, UK
  • European Institute for Health Records, Lille, France
  • European Molecular Biology Laboratory, Heidelberg, Germany
  • Fondazione PENTA - for the Treatment and Care of Children with HIV-ONLUS, Padova, Italy
  • Göteborgs Universitet, Gothenburg, Sweden
  • Helsingin Yliopisto, Helsinki, Finland
  • Institut für Epidemiologie und Präventionsforschung GmbH, Bremen, Germany
  • Institut National de la Santé et de la Recherche Médicale, Paris, France
  • Itä-Suomen Yliopisto, Kuopio, Finland
  • Karolinska Institutet, Stockholm, Sweden
  • King’s College London, London, UK
  • Maastricht University, Maastricht, Netherlands
  • Max-Planck-Gesellschaft zur Förderung der Wissenschaften, Munich, Germany
  • Medical Research Council UK, Swindon , UK
  • Provincia Lombardo-Veneta - Ordine Ospedaliero di San Giovanni di Dio— Fatebenefratelli, Milan, Italy
  • Tartu Ulikool, Tartu, Estonia
  • Teknologian tutkimuskeskus VTT, Espoo, Finland
  • Universidade de Aveiro, Aveiro, Portugal
  • Università degli Studi di Pisa, Pisa, Italy
  • Universität Leipzig, Leipzig, Germany
  • Universitat Pompeu Fabra, Barcelona, Spain
  • Universiteit Antwerpen, Antwerp, Belgium
  • University College London, London, UK
  • University of Cambridge, Cambridge, UK
  • University of Copenhagen, Copenhagen, Denmark
  • University of Glasgow, Glasgow, UK
  • University of Leicester, Leicester, UK
  • University of Manchester, Manchester, UK
  • University Pierre et Marie Curie, Paris, France
  • Vereniging Voor Christelijk Hoger Onderwijs Wetenschappelijk Onderzoek en Patiëntenzorg, Amsterdam, Netherlands
  • VIB, Zwijnaarde, Belgium

Patients’ organisations

  • Alzheimer Europe, Luxembourg, Luxembourg
  • Universitätsklinikum Erlangen, Anstalt des Öffentlichen Rechts, Erlangen, Germany
  • Vestische Kinder- und Jugendklinik Datteln, Dattien, Germany

SMEs

  • Concentris Research Management GmbH, Fürstenfeldbruck, Germany
  • Custodix NV, Sint-Martens-Latem, Belgium
  • Electrophoretics Ltd, Cobham, UK
  • GENOMEDICS S.R.L., Florence, Italy
  • MAAT France, Archamps, France
  • Pharmo Cooperatie UA, Utrecht, Netherlands
    Synapse Research Management Partners S.L., Barcelona, Spain
  • Societa Servizi Telematici SRL, Padova, Italy• Synapse Research Management Partners S.L., Barcelona, Spain 

Facts & Figures

Start date

01/01/2013

Duration 60 months
   
Contributions  
IMI funding 24 400 000
EFPIA in kind 24 100 000
Other   7 900 000
Total cost 56 400 000

Contact

Project Coordinator
Bart Vannieuwenhuyse

Janssen Pharmaceutica NV
Tel: +32 14 600320
E-mail: BVANNIEU[AT]its.jnj.com

Co-coordinator
Simon Lovestone
King's College London
Tel: +44 20 7848 0239
E-mail: simon.lovestone[AT]kcl.ac.uk

Managing Entity
Johan van der Lei

Erasmus Universitair Medisch Centrum Rotterdam
Tel: +31 10 70 441 22
E-mail: j.vanderlei[AT]erasmusmc.nl