The medical challenge
The predictive value of personalised models will depend on the successful integration of medical data (e.g histological analyses, genetic analyses of cancer biopsies, questionnaires on personal characteristics and lifestyle of the patient, medications and outcomes) into the model. These data are collected in different places and various time points but need to be gathered in a single dataset for each patient to allow integration of the data in a personalized model.
To address this, the ITFoM Medical Platform will unify existing quality standards for the collection and storage of biological material and clinical data sets in close cooperation with leading European activities. ITFoM will establish a reference data set from a group of individuals, each with a comprehensive collection of molecular and biological data in addition to the medical and lifestyle history in an unprecedented level of detail.
ITFoM will further identify leading medical centers in Europe to assemble cohorts of cases of selected forms of cancer to follow them up on clinical outcome. Comprehensive clinical data in combination with in depth molecular analysis of the cancer and the patients will then allow informaticians and statisticians to elaborate and test hypotheses on predictors of outcomes by a variety of techniques.
The data will be stored in dispersed databases, carefully managed based on internet and meta-library instruments. When needed, the data may be extracted from the various sources. A two-step encryption process will guarantee the patient's privacy. The reference data set will be used in the first project phase to develop a set of tools and collection of models, which will be validated in the second phase. Here the ITFoM Medical Platform will coordinate in the proof of concept process.
Finaly in the third phase, the implementation of the models to the healthcare system, the ITFoM Medical Platform will provide the first test cases and clinical trails, will describe the implications in public health and collect requirements for future medical education related to the paradigm shift given by a data-driven medicine.
During the whole project live time an expert group will accompany the ethical, legal and public health aspects and advise the ITFoM Medical Platform in developing new forms of patient involvments in medical research.
Relevant European activities in cooperation with ITFoM:
BBMRI: Biobanking and Biomolecular Resources Research Infrastructure
P²G: Public Population Project in Genomics
BioShare: Development of Harmonized Measures and Standardized Computing Infrastructures
Gen2Phen: Genotype to Phenotype Database
ECRIN: European Clinical Infrastructure Network
ELIXIR: European Life Sciences Infrastructure for Biological Information
PHGEN: Public Health Genomics European Network
Participants:
Medical University Graz, Austria
Max Planck Institute for Molecular Genetics, Germany
Free University Amsterdam, The Netherlands
University of Manchester, United Kingdom
ISC Intelligence in Science, Belgium
Charite Berlin, Germany
The University of Leicester, United Kingdom
International Prevention Research Institute (iPRI), France
Centro Nacional de Análisis Genómico (CNAG), Spain
Estonian Genome Center, Estonia
IMPACT Institute for the Digital Economy, Canada
University of Geneva, Switzerland
Invited Experts:
Ruth Chadwick (Cardiff Law School)
Herbert Gottweis (University of Vienna)