European Reference Networks Annika Nowak European Commission The
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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 Added value at EU level prevalence and complex diseases Multidisciplinary approach (different specialities/areas of knowledge) Need of cooperation: • Scarcity knowledge • Need education • Complexity / high cost • Effectiveness in the use of resources
Outcome call 2016 24 Full Member Affiliated partner Networks 26 COUNTRIES
24 BOND ERN Bone Diseases Euro. Blood. Net Onco-Hematological Diseases CRANIO Craniofacial anomalies and ENT disorders EUROGEN Urogenital Diseases Endo-ERN Endocrine Conditions EURO-NMD Neuromuscular Diseases Epi. CARE Rare and Complex Epilepsies GUARD-HEART ITHACA ERKNet Kidney Diseases ERN GENTURIS Genetic Tumour Risk Syndromes Metab. ERN Diseases of the Heart Congenital Malformations and Intellectual Disability Hereditary metabolic diseases ERN-EYE Eye Diseases RARE-LIVER Hepatological Diseases Re. CONNET ERNICA inherited and congenital anomalies ERN-LUNG Respiratory Diseases RITA ERN-RND Neurological Diseases TRANSPLANT-CHILD Connective Tissue and Musculoskeletal Diseases Immunodeficiency, Auto. Inflammatory and Auto Immune Diseases Transplantation in Children ERN-Skin Disorders EURACAN Solid Adult Cancers VASCERN Multisystemic Vascular Diseases
Clinical virtual care Remote monitoring & follow-up Remote guidance and diagnosis
Research, innovation & knowledge generation Key Elements of ERNs ØA framework for structured cooperation to maximise crosscountry expertise through joint research projects and clinical trials ØERN provide an opportunity to build top level translational and basic research around shared strategies ØDissemination 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 RESEARCH Research question/gap Prospective research Translational/trials Clinical/Imaging/ Biological Data Genetics, Molecular Pathology IT Solutions / Communication between HCP • common elements , principles and requisites
Funding/support
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 FP 9 • 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
