ERNs Pr Chris+ne Bodemer. Coordinator ERN-Skin Hôpital Necker Enfants Malades
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1 ERNs Pr Chris+ne Bodemer Coordinator ERN-Skin Hôpital Necker Enfants Malades
2 have been iden+fied by the Board of Member States on European Reference Network as a priority area Maladies rares: maladies aheignant 1/2 000 personnes en Europe
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5 «Imagine if the best specialists from across Europe could join their efforts An ini+a+ve of to tackle complex or rare medical condibons that require highly specialised healthcare and a concentrabon of knowledge and resources»
6 High Level Patient Management ERN - National - international collaboration Teaching and Training Communication e-health Tools IMPROVE THE QUALITY AND SAFETY AND ACCESS TO HIGHLY SPECIALISED HEALTHCARE Research Registries Patient Empowerment epag Outcome measures and quality control
7 Key role of Pa+ent Groups To enable the full engagement of pa+ent groups through democra+c representa+on, support and quality contribu+on, Eurordis has organized Policy Ac+on Groups based on the ERN disease grouping
8 24 ERNs
9 TASK FORCES Genod, AIB, HS ERN-SKIN RARE AND UNDIAGNOSED SKIN DISORDERS
10 PRC GENERAL COORDINATION 1 coordinator (Pr C Bodemer) assisted by 3 co-coordinators & project manager EXECUTIVE COMMITTEE 2 coordinators of each dsub thema+c group 1 coordinator of each transversal group PATIENT REPRESENTATIVE COUNCIL (PRC) TRAINING CLINICAL OUTCOME Epidermolysis Bullosa Ichthyosis & Palmoplantar Keratoderma Cutaneous Mosaic Disorders Nevi & Nevoid Skin Disorders and Complex Vascular Malforma+ons and vascular Tumours PhotosensiBvity Ectodermal Dysplasia including Skin Fragility Disorders & X-linked cutaneous disorders & Hair diseases & and unclassified disorders Cutaneous diseases related to DNA Repair Disorders Non bullous complex auto immune/ inflammatory cutaneous diseases Autoimmune bullous diseases and severe cutaneous drug reac+ons Premature Skin Ageing Monogenic Connec+ve Tissue Disorders Rare cutaneous tumours in children and adults SubthemaBc groups to be included in the ERN-Skin expansion plan Hidradeni+s suppura+va PAPA, PAPASH, PASH, PASS, SAPHO, Bechet, Degos DEEP PHENOTYPING e-health & REGISTRIES Each group is coordinated by medical specialists and pa+ent representa+ve(s) responsible for developing high level pa+ent management and research ac+vi+es PRC ERN Board 1 representative of each health care provider endorsed by its Member State
11 12 SUB THEMATIC GROUPS Epidermolysis Bullosa Cutaneous Mosaic Disorders Nevi & Nevoid Skin Disorders & Complex Vascular Malforma+ons & Vascular Tumours Ichthyosis & Palmoplantar Keratoderma Cutaneous diseases related to DNA Repair Disorders Ectodermal Dysplasia including Skin Fragility Disorders & X-linked cutaneous disorders Autoimmune bullous diseases and severe cutaneous drug reac+ons Monogenic Connec+ve Tissue Disorders Hidradeni+s suppura+va PAPA, PAPASH, PASH, PASS, SAPHO, Behcet, Degos PhotosensiBvity Non bullous complex autoimmune/ inflammatory cutaneous diseases Premature Skin Ageing Rare cutaneous proliferabon in children and adults Subthema+c groups to be included in the ERN-Skin expansion plan
12 ERN-SKIN Sub thematic groups with undiagnosed disorders The Rational -The complex pathophysiologic mechanisms of the different sub thema+c groups o`en match each other: the beher understanding of some skin diseases will be a key to have a beher understanding of the others, providing a beher knowledge on the skin biology -Each sub thema+c group needs a mul+disciplinary approach objec+ve to develop a collabora+ve approach with other ERNs -A lot of unclassified pa+ents
13 ERN-SKIN Sub thematic groups with undiagnosed disorders The Rational -Misdiagnosis (poor skin knowledge among HCP) -Ignorance regarding the management of skin symptoms inflamma+on, sbarrier altera+on, malnutri+on, sepsis, pain -Lack of training of paramedical teams -Poor recogni+on of the skin altera+on as a handicap -Poor social integra+on of pa+ents -Life-threatening diseases, skin carcinogenesis due to inflamma+on (chronic wounds ), immunosuppression or gene+c predisposi+on, secondary effect of treatments -The cost of treatments
14 Maladies rares «Les sans diagnos+cs» Ont un «village» Importance d une descrip+on clinique précise «deep Phenotyping» Importance des centres experts même langage (codage: Dg, symptômes) échanges (ERN-IT plateforme) Les classifica+ons évoluent intégrant maladies/syndromes anciennement décrits et maladies/syndromes nouveaux
15 High Level Patient Management Communication e-health Tools ERN - National - international collaboration IMPROVE THE QUALITY AND SAFETY AND ACCESS TO HIGHLY SPECIALISE D HEALTHCA RE Teaching and Training Registries Clinical Research Patient Empowerment epag Outcome measures and quality control
16 Maladies rares «Les sans diagnos+cs» Ont un «village» Importance d une descrip+on clinique précise «deep Phenotyping» Importance des centres experts Les classifica+ons évoluent intégrant maladies/syndromes anciennement décrits et maladies/syndromes nouveaux démembrement clinique/physiopathologique/géné+que Intrica+on étroite de la recherche clinique et de la recherche fondamentale: transla+onnel au bénéfice du pa+ent
17 Diagnos+c workflow Needs for a research plalorm Clinical workflow/healthcare organisa+on/erns Clinic, lab and Imaging Genomics Innova+ve integrated Omics techniques Unsolved So`ware/applica+on ontologies/innova+ve algorithms: Improved clinical diagnos+c tools Ontologies: Clinical standards Phenotype data storage/sharing plalorm Interoperable, standardised, registries Standardised consent Image standardised repository include fetophenotyping and fetopathology Genomes and transcriptome integra+on Ontologies: genomics standards Ontologies: cross-species genotype/phenotype Genotype/Phenotype data storage/sharing plalorm RD biobanks (DNA) data integra+on and processing integrated data analysis and interpreta+on Interoperability, integrated data analysis and interpreta+on Omics (metabolomics, proteomics, epigenomics,.) Molecular phenotyping Innova+ve applica+on ontologies for unsolved cases Match-making Brokerage system Animal/cell/iPSC models Interoperability between clinical repositories and research plalorms/data sharing standards
18 Merci
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