European Reference Networks Annika Nowak European Commission.

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Presentation transcript:

European Reference Networks Annika Nowak European Commission

The ERN Networks of healthcare providers aiming at improving quality, and safety and access to highly specialised healthcare Patients affected by rare or low prevalence and complex diseases Added value at EU level Need of cooperation: Scarcity knowledge Need education Complexity / high cost Effectiveness in the use of resources Multidisciplinary approach (different specialities/areas of knowledge)

24 Outcome call 2016 26 COUNTRIES Full Member Networks Affiliated partner Networks 26 COUNTRIES

24 EpiCARE Rare and Complex Epilepsies BOND ERN Bone Diseases CRANIO Craniofacial anomalies and ENT disorders Endo-ERN Endocrine Conditions EpiCARE Rare and Complex Epilepsies ERKNet Kidney Diseases ERN GENTURIS Genetic Tumour Risk Syndromes ERN-EYE Eye Diseases ERNICA inherited and congenital anomalies ERN-LUNG Respiratory Diseases ERN-RND Neurological Diseases ERN-Skin Skin Disorders EURACAN Solid Adult Cancers EuroBloodNet Onco-Hematological Diseases EUROGEN Urogenital Diseases EURO-NMD Neuromuscular Diseases GUARD-HEART Diseases of the Heart ITHACA Congenital Malformations and Intellectual Disability MetabERN Hereditary metabolic diseases RARE-LIVER Hepatological Diseases ReCONNET Connective Tissue and Musculoskeletal Diseases RITA Immunodeficiency, AutoInflammatory and Auto Immune Diseases TRANSPLANT-CHILD Transplantation in Children VASCERN Multisystemic Vascular Diseases

Remote guidance and diagnosis Clinical virtual care Remote monitoring & follow-up Remote guidance and diagnosis

Research, innovation & knowledge generation Key Elements of ERNs A framework for structured cooperation to maximise cross-country expertise through joint research projects and clinical trials ERN provide an opportunity to build top level translational and basic research around shared strategies Dissemination of research results, education & training activities

Registries, research and ERNs PATIENT CARE Patient clinical unmeet needs (treatment/diagnosis) Patient Data Population Cohorts/Concentration of cases Secured Databases Clinical/Imaging/ Biological Data Genetics, Molecular Pathology IT Solutions / Communication between HCP RESEARCH Research question/gap Prospective research Translational/trials common elements , principles and requisites 7

Funding/support Health programme – CHAFEA – ERN grants CEF – CNECT - It tools Horizon 2020 – DG RTD Structural funds – DG REGIO - translational research Erasmus + - DG EAC

Next steps and actions: ERNs and Research Building up research capabilities among ERNs Participation of the ERNs in the call European Joint Programming (EJP) on rare diseases (part of Horizon 2020) and future FP9 Plans to interact with the European Strategy Forum on Research Infrastructures (ESFRI) Interaction with IMI initiatives, European Medicines Agency and clinical trials related initiatives.

Further information: http://ec.europa.eu/health/ern/policy/index_en.htm