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 Charles AUFFRAY European Institute for Systems Biology & Medicine - CNRS-ENS-UCBL Université de Lyon - France 1

(2011) Allergy 66,

Major achievements of MeDALL Large scale harmonization of allergy phenotypes in 13 birth cohorts (more than 43,000 children followed up since birth - 4 to 18 years) Asthma, rhinitis and eczema have common mechanisms and risk factors (classical and novel phenotypes support unifying phenotype view) Pinart et al. (2014) Lancet Respiratory Medicine 2: Development of knowledge base repository of MeDALL results (support integration of multiple data types to define allergy handprints)

Major achievements of MeDALL Novel chip implemented for comprehensive screening of 176 allergens (detection of pathogenic IgE and protective IgG) First phase results from epigenetics and functional genomics platforms (first genome wide epigenetic analysis identified 7 allergy-related hits) Advances made in functional immunology and animal models of allergy Initiation of translation of MeDALL results in healthcare in Scandinavia (for early diagnosis, 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 contributions to 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’s contributions to 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 towards comprehensive 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 Prevention Inequalities Healthy ageing Sustainabilit y of health systems & economies Health in all policies Chronic diseases Innovation WP11 Dissemination Interpretation of study results into lay terms Dissemination of project results for policy- makers and public MeDALL seeks promotion of 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