The ERN-SKIN 2017 Work Programme aims at laying the groundwork for the key strategic objectives set forth in the 2017-2021 Work Plan. The objectives are:
• to build the operational framework and set up all the necessary functioning networking services, evaluated by a quality control strategy, with a special focus on:
--Patient Representatives Council to empower patients in the organization of cross-border healthcare pathways
--8 sub-thematic groups on high level patient management and research
--4 transversal groups: training & therapeutic education, e-health & registries, Deep phenotyping, clinical outcomes.
• to cover the largest possible number of diagnosed and undiagnosed rare and low prevalence skin disorders in order every patient finds a home in the ERN-SKIN with the inclusion of 4 new sub-thematic groups
• to integrate more members or affiliates, from Member States not yet represented in the ERN-SKIN with a particular attention for including small and Eastern European countries and involving in training activities Member Sates with insufficient number of patients or lacking technology or expertise
• to develop collaborative relationships with overlapping ERNs & Scientific Societies with the set up of common working groups to promote a multidisciplinary management
• to assess reliable resources for patients and healthcare providers thanks to survey on available services for patients and professionals, updated guidelines and best practices, validated therapeutic education programs, high-quality training sessions as well as efficient information and dissemination tools.
• to pool expertise and provide the first ERN-SKIN services: -- the first version ERN-SKIN directory ;
-- the first version ERN-SKIN website; --the first ERN-SKIN training; -- the development of the ERN-SKIN guidelines on ichthyosis; -- the definition of concrete road maps by each sub-thematic and transversal groups, a prerequisite to update/develop guidelines and build innovative e-health.
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The ERN-Skin 3-year proposal for third to fifth year of the Framework Partnership agreement (FPA) n°739505 implementation builds upon the ERN-Skin year 1 and 2 achievements. It takes into consideration the recent development of the ERN IT platform (ERN Collaborative Platform and Clinical Patient Management System - CPMS) and the EU policy on ERN. The goals and activities are coherent with the ERN-Skin multiannual plan included into the FPA . By pooling expertise, the planned activities will contribute to achieve the ERN-Skin multiannual goals:
• Strengthen the ERN-Skin operational framework thanks to regular meetings of the ERN-Skin bodies, the management of the Brexit consequences and the integration of members or affiliates
• Cover the largest possible number of diagnosed but also undiagnosed rare and low prevalence skin disorders so that every patient finds a home in the ERN-Skin
• Provide reliable information on diseases and services thanks to the interactive directory update
• Further develop multidisciplinary management and facilite the mobility of expertise thanks to CPMS and cooperation with other ERNs and scientic societies
• Share and spread harmonized best practices thanks to the adaptation and development of guidelines and recommendations for health care professionals
• Develop health care professional skills thanks to courses, e-trainings and practical trainings
• Empower patients thanks to the development of specific patient education programmes
• Involve Member States with insufficient number of patients or lacking technology or expertise thanks to support to attend courses and access CPMS
• Develop, test and use of the Skin Phenotyping Ontology and Terminology App
• Issue recommendations for an ERN-Skin registry
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Situation
The ERN-Skin aims to enhance high-level patient management for rare complex and undiagnosed skin disorders, by improving the: quality, safety, access to highly specialized healthcare. These diseases share: frequent misdiagnosis; lack of training of paramedics; frequent systemic involvement; poor recognition as a handicap; poor social integration.
Objectives
1.Better exchange of expertise; 2.Improved healthcare organization by pooling the resources; 3.Update/ develop guidelines in cooperation with overlapping ERNs; 4.Improved training of caregivers; 5.Patient/family therapeutic education; 6.Widespread general public information and recognition of the disease as a handicap, 7.Deep phenotyping for a common scientific language; 8.Development of an e-health platform allowing telemedicine and registries (research); 9.Comprehensive socio-economic study
Methods
1.Governance thought to ensure maximum geographical and target groups representativity and outreach across the EU; 2.Sub-thematic groups (specific clinical outcomes) and transversal groups (deep phenotyping, e-health& registries, training, common clinical outcomes); 3.Theoretical and practical courses for specialists and paramedics across the network and other ERNs covering different same symptoms; 4.Set up of a Patient Representative Council, representing all patient groups; 5.Communication and information: dissemination of Minutes, Reports in/outside the network; development of tools (website, newsletters, etc…); periodic meetings; 6.Support of European scientific societies
3rd HP relevance
ERN-Skin will facilitate access to better and safer healthcare for EU citizens by identifying centers with the necessary expertise and resources to treat rare diseases with skin involvement, as well as by sharing knowledge for an improved healthcare offer. ERN-Skin has a strong focus on developing innovative e-health tools for HCPs, thus facilitating cross-border access to expertise for effective patient management
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