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European Federation of Allergy and Airways Diseases Patients Associations Updates on Innovative Research for Allergy and Respiratory Disease in the European Union: MeDALL (Mechanisms of the Development of ALLergy) European Parliament Brussels – June 17, 2014.
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European Federation of Allergy and Airways Diseases Patients AssociationsUpdates on Innovative Research for Allergy and Respiratory Disease in the European Union: MeDALL (Mechanisms of the Development of ALLergy)European ParliamentBrussels – June 17, 2014 Charles AUFFRAY cauffray@eisbm.orgEuropean Institute for Systems Biology & Medicine - CNRS-ENS-UCBL Université de Lyon - France
Major achievements of MeDALL • Large scaleharmonization of allergyphenotypes in 13 birthcohorts (more than 43,000 childrenfollowed up sincebirth - 4 to 18 years) • Asthma, rhinitis and eczema have commonmechanisms and riskfactors (classical and novelphenotypes support unifyingphenotypeview) Pinart et al. (2014) Lancet RespiratoryMedicine 2:131-140 • Development of knowledge base repository of MeDALLresults (support integration of multiple data types to defineallergyhandprints)
Major achievements of MeDALL • Novel chip implemented for comprehensive screening of 176 allergens (detection of pathogenicIgE and protective IgG) • First phase resultsfromepigenetics and functionalgenomicsplatforms (first genomewideepigeneticanalysisidentified 7 allergy-related hits) • Advances made in functionalimmunology and animal models of allergy • Initiation of translation of MeDALLresults in healthcare in Scandinavia (for earlydiagnosis, prevention and therapy) • Harmonization of MeDALL questionnaires and informed consent forms
Measures to Support Innovative Research that Benefit Allergy and Airways Diseases Patients Move from restricted informed consent to open informed consent Move from heterogeneous descriptions to harmonization and standardization Move from restricted ownership to open access custody of samples and data Support the formation of a network of systems medicine centers in Horizon 2020
Integrative Systems Biology & Medicine Predictive, Preventive, Personalized, Participatory Medicine Participatory medicine: a driving force for revolutionizing healthcare Hood L, Auffray C. (2013) Genome Med 5:110 I don’t know where to look for these based on references and I’ve had calls with speakers in between searching.
Patient contributionsto MeDALL • Promotion to the EU institutions, European and international network of patient groups & EFA partnerships • Dissemination in lay language on the project’s final and interim results and what they mean for patients • Impact in policy and care • Patient perspective
MeDALL’scontributionsto patients • Patient questions: • Why? Why me/my kid? How? What can I do? Can I do something else than take lots of medicines? Will I always have it? Will my kids get it? Can it get severe? Can I die? Can I live a normal life? How does environment around me affect…. • MeDALL offers an increased understanding of allergy • Adherence • Early & correct diagnosis • Better targeted treatment • Prevention??? • Cure???
Moving towardscomprehensive national programmes WP10 Translational integration of systems biology into healthcare • MeDALL WP10 will create a template for creating national allergy programmes in Europe that is adaptable for different contexts • EFA will ensure patient perspective for communicating with the general public, allergy patients and policymakers
Policy Approach WP11 Dissemination • Interpretation of studyresults into lay terms • Dissemination of projectresults for policy-makers and public MeDALL seeks promotionof health and prevention of allergic diseases, particularly in children!
Thank you for your attention! European Federation of Allergy and Airways Diseases Patients' Associations (EFA) EFA 35 Rue du Congrès 1000 Brussels, Belgium www.efanet.org